Sex, Frustration and Reflex Sympathetic Dystrophy (CRPS)

When you have RSD/CRPS, having a relationship can be very challenging. I have been dating my boyfriend now for three months. Explaining to him about how much pain I am in is impossible. It seems to go through one ear and out the other.  He is always pressuring me into having sex with him even after telling him I am in pain and don't feel good.  My RSD pain is mid back all the way to the top of my toes. Most days hugs cause me pain, so anything with touching of the vagina, thrusting of the hips. and the weight of the other person on top.   I just seem to not be able to get through to him on how much pain I am in. This scares me because if I can't get through to him and he doesn't watch what he is doing I will have to break-up with him.

Today, for instance, I got home from OBGYN who just did a pre-op exam for my tubal ligation surgery I will be getting the end of October. This exam caused my RSD to have pain and burning in my vagina. He knew I wasn't feeling very good. He came over and surprised me with this beautiful flower and candy. How can you not love and give your guy pleasure for bringing a thoughtful gift when you are not feeling good?

He spent time with me watching Merlin, a fun TV show, but within an hour he starts to touch my vagina.  I quickly push his hand away. I was really mad at him for that. He tells me, "I can't help it I have such strong feelings for you." Then he tries it again. He whines about having a boner and he has to release it. Now I am thinking did you really come over to make me smile or did you come over to get pleasure?  

Recently, he has been having a lot of pain in his ankle to the point where he doesn't want to do anything because of it.  I really wanted to kick his foot so hard and say, "That is how I am feeling. I will stop kicking you if you stop trying to touch me where I don't want to be touched."

Did I say how much it sucks to be a woman?
Especially a woman in pain?
The more and more I am in this relationship the more and more I hate being women. In the beginning of our relationship,  I kept  telling him I am not a sexual type of person. Sexual activity freaks me out. It gives me so much anxiety. Having a lot of pain and not feeling good doesn't help.
My medications also don't help. They cause bladder infections, vagina dryness, burning and soreness.  I  was open and honest with him from the start of this relationship. I told him "I don't want to have sex until I am married or in a relationship for at least 2 years. Even if we have been together for 2 years or married, I cannot physically feel like having sex all the time. You would be lucky if you get any type of sexual type of activity once a month."

I know he gets really frustrated with me because I don't stay over at his place. The main reasons why I don't stay at his place is:

1. It is really hard for me to find a comfortable spot. The only spot I find to be comfortable is in my recliner.  He doesn't have a recliner. Sleep is very important for someone with health problems, especially with RSD/CRPS. 
2. My medications mixed with his high sex drive don't make a safe environment, at least at this time of the relationship. My Ambien can cause me to do things I don't want to do. I fear he might push me into having sex when I am out of it. I know you are probably thinking, "If you are worried about this why are you going out with this guy?" I understand that and that is why I am taking it slow and really watching him and analyzing him and his actions. If he can't control himself or keeps pushing himself on me I will break up with him. 
3.  His brother and brother's fiancee live with him. They are great people, but it makes it harder. 
4. I really want to be settled in life first. I am in the process of trying to get on social security disability because I can't find a full-time or even a part-time job that will work with my health. My RSD/CRPS, Rheumatoid arthritis and stomach are getting worse. I don't want to get into a situation where he is the dominant of the relationship. No one in the relationship should be dominant. I want to make sure my confidence and self-esteem is ready for it.  I also don't want to feel I should be having sex with him because he is paying my bills and giving me a house to live in.  I don't think he would do that but I am still learning things about him. 
5. Changes are hard on RSD/CRPS. For instance,  a few weeks ago I worked on a Music Video . I don't go to bed until 1:30am and get up around 11:00am. I had to be on set at 5:30 am. Trying to go to bed at 9:00pm was really hard and waking up at 4:30am was impossible, but I did it. I didn't get home until 9:30pm. That is a very long day with RSD/CRPS. I am still paying for doing that music video. 

Don't get me wrong, he is a great guy, at least on and off LOL. When he can he goes to many of my doctor appointments with me. He does things he isn't a fan of doing such as seeing musicals and plays. He plays cards with my grandma and my mom. I live with my parents right now so he puts up with my loving parents.  I think that is why he makes me feel bad about not giving him pleasure. Having sex though is something I won't do, at least for a long while.   This is my body and I don't feel comfortable about doing sex type activities. Plus I suffer with severe amount of pain all the time. If he doesn't like it then the relationship will just have to end. This does scare me because I worry if I will ever find someone who excepts that I am in pain all the time and can't do things normal people can do. They say they love me no matter what, but I am starting to find that is not always true. They love you until you can't give them what you want.
I hope everything works out and look forward to learning more and more about him. I promise to keep you up to date on my relationship. I will also let you know tips and tricks I learn being in a relationship while dealing with health problems.

Almost Killed a Nurse

My stomach is getting worse. After my appendix was removed a couple of months later I started having problems around my lower stomach area. It now has spread all over my stomach, but the worse area is the sides and lower part of my stomach.  

Once school ended I decided I should get it looked at. I went to my Gastro doctor where I live. It has been ten years since my last Endoscopy and Colonoscopy. To my surprise, she didn't even want to do the basic testing to figure out what is going on. She decided to send me to the University of Michigan Hospital's Gastro department. I was hot because she kept saying things like, "Graduating from college adds a lot of stress to your life." Basically, she told me its just stress and IBS. IBS is a catch-all. It is when a doctor doesn't want to deal with figuring out what is going on or has no clue what is going on they will diagnose it as IBS.  I wasn't happy at all.
        Saturday I drove from Grand Rapids, Michigan to the University of Michigan. I had a horrid nurse experience.  Please pardon my language. She poked me 8 times and I finally said, "I want someone else." She then goes on saying "If you don't have me do it then you won't be getting your CT Scan today." I replied crying and pissed off at the same time. I said to her, "I am not leaving this F**ing spot and I am getting this F** x-ray done right now. I didn't suffer for two days with the steroid prep for and drank the nasty shit to have to come back and do it all over again because you f**ing suck as a nurse and who won't call in someone else to do. If you leave this eighth needle in my arm and its not fully in the vein, which it isn't, and the contrast causes damages to my arm I will sue your ass. Not the hospital. YOU." She then pulls out the eighth needle, which was hanging out of my arm bleeding all over the place, and goes to get someone else. The CT Scan nurse cames in and gets in one try. Asshole nurse you should have called her in sooner after the third try when I asked you nicely. I am not a person that has a temper. I feel like I am such an evil person for getting so upset, but when you have Reflex Sympathetic Dystrophy it can be scary especially when I started feeling the RSD pain spreading into my arms. 

Have you ever had a bad nurse experience? Let me know make a comment. 

Pain Medication Attitude

I feel like I am a coward and mental because I take pain medications. 
I especially feel this way when I talk to people about my pain and they quickly reply by saying "my sister (or someone they know) had back pain and her doctor put her on alot of pain medications like you and she ended up getting addicted to it. We pushed her to see a different doctor and that new doctor got her off all the pain medications. Ever since she got off from all her pain medications she is so much better. If she can do it I sure know you can. You should really think about getting off from them."

First off, back pain is nothing compared to RSD/CRPS pain. 

Secondly, our society is using the word addiction wrong!  I take pain medications on a daily bases, but I am not addicted. I am dependent. My friend would say, "yes you are." I reply back, "No I am not." I got into explaining why. 

Addiction is when you take way more then prescribed. You go to different doctors to get more pills. You buy off the streets. You do whatever you have to do get that medication. 

Most people who take it and take it right is Dependent. I am depended on it. If I go off from it I will have withdrawal. After so many years I may have to increase the dosage, but not because I crave it but because my body gets use to that dosage. 

I am not even close to being addicted because I take less then what I am prescribed. I hate the feeling of pain medications. I don't know why the hell people what to take this stuff and especially at a huge dose. 

Another thing back pain, RA, even cancer pain is nothing compared to RSD/CRPS.  You can sit there and argue with me, but studies have proved that. 
http://www.rsdhope.org/mcgill-pain-index---where-is-crps-pain-ranked.html

This second graph came out of the Int J Womens Health (2010)'s article Advances in labor analgesia

vAffiliation: Department of Anesthesiology, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
http://openi.nlm.nih.gov/detailedresult.php?img=2971706_ijwh-1-139f1&req=4

So as you can see RSD/CRPS is off the scale. I wish I could say it is around the toothache or even cancer pain, but sadly it isn't. That is why we need to get a cure or just some awareness. 

I am so tired of people looking at me like I am making up my pain to get pain medications. 

 If you look at me you would have no clue I am dealing with burning pain and knifes being stabbed all over my body. 

I already feel like I am a loser of a person inside because I am 29 years old and have to take all this medication. I take more medications then my grandmother. I also have to have my mom drive me to places sometimes. I have to live with my parents because of all my medical expenses and student loans. I have been able to work because I can't work and do school all at the same time.  But how dare you tell me that if my sister with back pain can go off from all pain medications why can't you?.  

Everyone deals with pain differently.  I am a stubborn person who tries very hard to not let the pain take over my life and dreams.  I may not be able to load my day like most others and like I use to but I still will fill my schedule up as much as I can handle.  I am still going to work towards my goals of working in the creative industry of film and theatre. I may have to do it different then most, but I still going to do it. I know this will be hard because I am competing against healthy people, but the one thing they don't bring to the table is life, determination and perseverance.