I Have Gotten Lazy

Lately I have been trying to figure out how to get back to my old, highly motivated self. After a long discussion with my husband I have finally figured it out.

I have gotten lazy.

Prior to having chronic pain I was never lazy. I have worked since high school, I exercised daily, and was very active in a lot of other things. Chronic pain just wears you down and can be traumatic. The fear of grieving and loss has made me not want to try to do things anymore. I really have a hard time getting motivated to do my school work because I don’t want to lose it or grieve over it again. The same with working towards a career. The loss that comes with chronic pain is HARD.

Chronic pain also makes you tired. Like, really really really tired. Which I think is odd. Anyways, I have let this part of my condition control parts of my life. Before I would fight and push through it but now I have essentially given up and hang out on the couch most days.

However, I am on a mission. I am on a mission to fight for the life I want to have and that starts today. I am going back to my normal clean eating diet since I have fallen off the wagon a bit in order to try to increase my energy. Also, I plan on forcing myself to continue with school and try to be more active even though I hurt. Being mentally well is also as equally important when it comes to chronic pain because depression can exacerbate the pain unfortunately.

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When Life Hands You Lemons…. Apply for A Job

I APPLIED FOR A JOB TODAY!

I APPLIED FOR A JOB TODAY!!!!!

This is a pretty big deal for me. Granted I don’t really feel all that much better but after feeling sorry for myself and my situation I have come to the realization that I do not like this person that I am currently. I feel like a stay at home wife that does nothing with her life. I am only 25 and I am already staying home, WITHOUT a baby. Come on, I haven’t even lived yet!

However, this isn’t just any job. It is a floral design position! This is my dream! Ever since my husband and I purchased our house my artistic abilities really flourished onto other things such as interior decorating and floral design. I absolutely love making my own arrangements and wreaths. This is something I do seasonally and absolutely enjoy. I decided I would try making my own arrangements a few years ago after going to Hobby Lobby to purchase a wreath only to be disappointed that it cost $100!… I knew I could make one, so I did! A new skill and hobby evolved from this and it is something I am passionate about.

If it wasn’t for vulvodynia and my chronic pain, I would have never practiced this skill to the extent that I have been. Let me tell ya, gift-giving is so much fun now! Plus, the holidays around my house are so beautifully decorated now. Since I have more time to devote to my hobbies, I learned that I absolutely LOVE floral design and interior design. A lot of my friends even ask me to come help them decorate their homes!

Anyways, this job is just a part-time, few days a week type thing but I would love to have the opportunity to work with another person that has more experience than I do. We can learn a lot from other peoples experience and expertise. Even if she didn’t hire me I would probably ask her if I could come in and learn from her. 🙂

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Losing Motivation

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Pain is hard. Having your whole life changed in a matter of months is truly devastating. There is a grieving process that happens with chronic pain as you mourn the loss of your old life and the activities you once loved. When vulvodynia struck me I was in my Junior year of college at a private University. I worked so hard in order to get to this private school and even was inducted into an honor society at my junior college previous. For months I tried to work through the pain but there was so much walking. College campuses seem massive when your vagina burns while walking. Once spring break hit, I could barely walk or stand the pain. I hit my pain capacity and made the decision to drop out of college in order to focus on getting well.

Mourning the loss of yet another thing in my life was hard. I was incapable of handling the stress physically and mentally that I felt like I was failing at overcoming this chronic condition. Along the way I learned a lot of coping skills with the help of my therapist. Thank God for her because I have no idea how I would be so strong mentally and be able to fight this battle daily. Even though I hurt, I am able to find the strength to keep living. It is a different way of life, one I am not used to, and don’t particularly favor but I am becoming at peace with it.

In October, I decided to go back to school doing an online program. We just started a new term January 5 and I am lacking the motivation to even do my homework or participate. All I have to do is sit on my couch and do my assignments from home. It is hard to find the motivation because I find little joy out of it because I prefer in-class discussions and I just feel like, what’s the point? I’m not even sure if once I graduate I will be well enough to sit in at a job. What if I am like this forever?

That’s the bad part about chronic pain. It wears you down and kills your motivation. However, I have learned through my experience with chronic pain that everything is usually a forced effort for me. I have lost a lot of things in my life that I was enjoyed and was thankful for now that those things are gone, it is hard to find the motivation to rebuild because the loss was just so great. The grieving process is hard and it is a struggle.

BUT, I will continue to push and fight. I will be realistic with myself and not expect myself to get a 4.0 as I did years past because I am not the same person. I will do my best in school and force myself to do it the best that I can. Nothing is easy when it comes to chronic pain or life in general but I am hoping that it will be worth it in the end.

Who knows, maybe I will be pain free when I graduate in October 2015? Only God knows the answers and all I can do is continue with the treatments that are given to me.

In order to stay positive and motivated through out this process I use Pinterest a lot. I have my very own, special motivational quote board! How do you keep yourself motivated through hardships?

Feeling Better, One Day At A Time.

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Relief is on its way…

My pain is down from a 7 to a 5. This is very very new. I was struggling for so long but I think the gabapentin has been kicking in. My mind has also been better and more positive, which is always a GREAT thing.

I am ready to get my life back on track. Ready to be my normal 25 year old self. I hope to be able to enjoy SEX with my husband, feel sexy in clothing, be my old fashionable self, and exercise like a crazy lady again. I am choosing the positive route to get through this.

Wishing all my readers and fellow chronic pain suffers a better, more positive New Year!

Doctor Shopping- How To Deal With The Stigma of Chronic Pain

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I am not sure how many negative comments I have gotten from people when it comes to my chronic pain. I have been told that I am doctor shopping, looking for the answers that I want to hear, that I need to get over it, and that I need to move on with my life.

However, this negativity doesn’t take into any consideration that it feels like someone took a blow torch to my vagina. Seriously, a lot of people will not understand. Especially if it is vaginal related. Pudendal nerve damage associated with vulvodynia is a rare condition but it is real.

In regards to the negative comments, I think it is important to “doctor shop”. My condition is rare and a lot of doctors do not understand the condition. I have been treated for numerous things and have been checked for every kind of STD under the sun because doctors do not understand vulvodynia. So in order to find a doctor that understands that this type of pelvic pain involves the pudendal nerve and is in fact caused by nerve damage takes some work. Personally, I only think “doctor shopping” is negative when people are drug seeking. However, thanks to those drug seekers, I had the HARDEST time getting my doctor to prescribe me Baclofen, a muscle relaxer. Even after he knew that I HATE taking any sort of pharmaceutical drugs.

Moreover, this journey is not about looking for answers that I want to hear, it is about finding the RIGHT answers. Previously, I was diagnosed with Lichen Simplex Chronicus from the University of Iowa. If I would have stopped “doctor shopping” after getting this diagnosis, I would still be smearing steroids on my vulva. However, I knew deep down that this diagnosis was wrong. I knew that my vulva wasn’t leathery and that it did not itch. So how could there be an itch-scratch cycle? Anyways, I firmly believe that we have an intuitive part of our mind that knows if our treatment is correct or not.

In terms of getting over it and moving on with life, pain needs to be controlled first if it is severe. My pain has been a constant 7 for months now. I force myself to walk my dog twice a day, run all of our errands (which is a lot for some reason), attend school, and continue treatment. I AM TRYING! There is no “getting over it”. My vulva always burns and I am trying to deal with it the best I can. I am back in school trying to move forward but I cannot work and go to school at the same time. Stress combined with a lot of walking only exacerbates the pain.  However, I fully intend to finish school and then get a job. Baby steps. One thing at a time.

Despite the negative comments, it is important to understand that life changes with chronic pain. I was supposed to graduate this December with honors from a private university and I was working in banking awaiting my graduation so I could climb the ladder. Unfortunately, vulvodynia rocked my world. Life changes, Relationships change. My relationship with my husband is no longer the same. It is HARD to deal with because intimacy changes. Your world as you know it is now totally different,

However, a lot of people are not going to understand chronic pain. If there are negative comments made towards you, take it in stride. If people are not in pain, they do not have the capacity to understand how life changing and devastating it can be.  It is also important to keep negativity and negative people at a distance because a lot of negative stress can be harmful to chronic pain conditions. Always remember to think positively and remain hopeful. That is the only way to get through this!

Finding A Happy Medium Between Chronic Pain and A Well Mind

Why is finding the middle ground so hard when it comes to managing chronic pain and having a well mind?

Since a lot of people think I am crazy (cray cray), I have been working on being mentally well. I sort of reverted back to my old before vulvodynia state where I was busy. Busy-ness and doing things out of my comfort zone like seeing old friends has been helping my mind greatly. My friend came home from North Carolina that I got to visit, I went home to see my cousin and old friends, and I went shopping with my best friend AND a new friend. (OMG, I totally have a new friend, I am so introverted so it is pretty awesome!).

My mind has been feeling great and I have been a lot happier this past week. Even though I hated Christmas, I did not dwell or let that bring me down. I have been pumped up mentally! Unfortunately this old coping skill is not the greatest.

My vagina is on FIRE even more. And theres some more redness and inflammation today. How uncool is that… Totally bummed. I won’t have a break for a few days as I have appointments for the next three days.

Therefore, I think I better find new coping strategies. I start school again next Monday, even though I have no motivation and absolutely hate it. Also, I am wanting to start yoga again. I guess I will just try those two things and not be as busy and hope my mind is ok. I mean, I don’t really know what else to do? I am trying all sorts of things but this is the worst one in terms of my pain BUT my mind feels so much better.

Do any of you have any tips on managing depression and chronic pain? Have you found a happy medium?

Six Things I’ve Learned in 2014.

2014

2014 has been quite the year for me. October was my one year vulvodynia anniversary, I got married in July, and my mind has been through hell and back. However, I have learned a lot through out this year that I think is important to realize.

1. You are not crazy. When it comes to chronic pain and conditions that people cannot physically see such as vulvodynia, the pain is real and no, you are not just making it up. I am not sure how many times I saw my gynecologist for a burning vagina and the nurses were like “well, it looks normal, besides a small amount of inflammation”. Or, the dreaded, “let’s check you for all STD’s possible”(so embarrassing!!!). Despite all the embarrassment, it is important to keep pushing through doctors that don’t understand in search for new ones that do. I now have a great gynecologist who knows about vulvodynia and is receptive towards treatments that I suggest, even though she doesn’t have many answers for me. AND I have a pain specialist who understands that it is the pudendal nerve that is associated with vulva pain. So, continue your fight and push through in order to find doctors that understand the condition. This takes a lot of research and time spent BUT you are not crazy!! This is totally real, unfortunately.

2. Not Everyone is What They Seem- This was the HARDEST lesson I have learned this year. Sometimes, the people you think that would be the most understanding turn out to be the ones that talk about you behind your back. It is especially hard when they are family. However, some people will surprise you and really want to be there for you. Either way, it is important to embrace the positive influences in your life and keep the negative people away. Unfortunately, sometimes those negative people are family so it is important to realize that those characteristics reflect on them and who they are but it has nothing to do with you and its important not to let what they say effect your mood.

3. No One Really Understands- The medical community that is. For some reason, all vulvodynia treatment is different. Either they want to cut your vulva off, prescribe you nasty creams, or inject you with medication. There is a lot of controversial treatments that are associated when it comes to vulvodynia. It is just really trial and error at this point because every body is different, or so they say. So don’t get your hopes up every time you get a new treatment. That wears you down like no other. Just keep in mind that you may have to try several things before you find something that works for you. This goes for ALL chronic pain sufferers.

4. Support Groups/Blogs Are GREAT- Before starting this blog, I felt so alone in my journey and I felt like I was the only one with a burnt vagina and I felt hopeless. However, after starting this blog I have had the opportunity to read about other people’s journeys and fabulous women have reached out to me. Finding people who really understand and are going through similar circumstances helps heal the mind of any ill feelings and really lets us know that we are not alone. So, THANK YOU to everyone that has commented or reached out to me through this blog. It really means the world to me!

5. You Change As A Person When You Face Chronic Pain- Chronic pain is hard. Either you can let it make you depressed and crazy (literally, I was close, HA!) or you can learn to deal and work on being positive. Personally, I think it is a mixture. It is hard not to get depressed when you have an unrelenting pain that is severe. BUT it is important to force yourself to think positive and keep your mind in a good place. Especially in the beginning of your chronic pain journey, it is easy to fall into a deep depression but FIGHT to tell yourself positive thoughts in order to not allow the depression to consume you. However, there are some positive changes that do happen. I find that I am more sympathetic to people and their problems and understand more when someone tells me they are sick or also face a chronic issue. You really learn a lot about yourself and your capacity to fight, love, and LIVE your life even though you are in pain.

6. Remain POSITIVE!- I know this is hard sometimes but it is IMPORTANT to force our thoughts to be positive. This is the only way to survive chronic pain/illness. Not everyone is going to understand, be sympathetic, or be there for you but it is important to realize that you are not crazy, this is real, and all you can do is deal with it. Being positive will make your mind feel better and ultimately make your illness feel a little better. Every day may be a fight to be positive but focusing on that fight is really the most helpful piece of advice I could ever give anyone.

If you have any more advice or things you have learned please comment below. Thank you to each and every one of you that has taken time time to read my blog, commented, or reached out to me. Blogging has been the most humbling and helpful experience I have had through out my chronic pain journey.