The past week has been hard on me. I have been having a lot of issues with my joints, and my Chiari pain.
I want to write about a topic that seems to be taboo: How to deal with being intimate when you are living with chronic pain.
For most people, its hard enough to talk to their partner or doctor when they have a normal, healthy, sexual relationship. Add having chronic pain to that mix, and the conversation becomes almost extinct.
It is of great importance to keep the channels of communication open, but being exhausted and in pain doesn’t help. If you feel like you can’t physically talk to your partner face to face, there are other ways to let them know what your feeling. Write a letter, text, email, or just stand behind a door! It can be hard to talk about something that makes us feel so vulnerable, but it can strengthen your relationship. This conversation is best had outside of the bedroom. Set aside time when your not busy, and you can focus on the conversation you are having.
Our partners can feel rejected or unattractive when there are problems with intimacy. You need to be open, and explain that there is nothing wrong within your relationship, but that being in pain, and dealing with extreme fatigue doesn’t exactly make you want to rip your clothes off!
I know its hard to think or talk about what you want out of a sexual relationship with your partner, but intimacy is a very large part of what makes us feel loved and bonded with our partners.
There are a few things that have helped me in my own relationship that I would like to pass on to you:
- Schedule a “date.” Don’t do a lot of house work or errands that day. Don’t go anywhere if you don’t need to. That way you can share a nice evening together just catching up and spending quality time together.
- Take a relaxing hot bath ( if you can) and invite your partner in the room. They can give you a light massage to help you loosen up.
- Cuddle in bed. Intimacy is so much more than regular intercourse. You can always do other things. Just spend that time alone together and reconnect with your partner.
- Tell or show your partner how attractive they are to you. Being in pain takes a toll on your self esteem.
- Leave little notes for your partner, or give them a random for no reason card to say you care.
The topic of sexual relationships and intimacy is not talked about enough. People are usually too ashamed to talk about something that is perfectly natural. This especially goes for women. We need to speak up about what we do and don’t want, and what works, what doesn’t, and how our condition effects our ability to become aroused. These things need to be discussed in relationships so your partner isn’t feeling left out or unloved. Our brains are wired to feel love differently. For men, its through physical, sexual contact. For women, its more mental.
Just remember, when all else fails, just talk it out! Now go! Talk to your partners and tell them what they mean to you 🙂
I have not been doing well the past few days. My pain has been bad, and I haven’t been sleeping. My Chiari friend Jen Babcock has been kind enough to share her story with us!
I was born and raised a farm girl and a tomboy. I have always been physically active, played sports, loved life and lived it to the fullest. I have never been one to speak up for myself or want to tell my story until now.
My journey with Chiari began back in 2001, working as a rehabilitation assistant on a weekend day helping out the physical therapist on duty. We were working with an elderly patient who had gait (walking) difficulties. As we were walking the patient along the parallel bars, she lost her balance and the therapist and I went to catch her and in the process I injured my neck.
I went through physical therapy myself, injections in my neck, pain medication, depression medications (because they said I was depressed and not in pain), multiple evaluations with multiple doctors and then finally, an MRI was ordered. The results were that I had Chiari I Malformation. My family doctor referred me to the University of Wisconsin, Madison, where I saw Dr. Iskandar. He is a neurosurgeon at UW who had supposedly specialized in Chiari.
It was suggested by Dr. Iskandar that I have decompression surgery. Obviously, if my neurosurgeon is suggesting this, I am going to believe that this is what I am supposed to do. I was released after four days in the hospital only to have to go back two days later with aseptic meningitis. I spent another four days in the hospital. After two follow-ups with Dr. Iskandar, another MRI, an EEG, physical therapy, chiropractics, more medication, and a year of time, I still wasn’t completely normal, but was told that this is my new normal.
I learned to accept the daily neck pain, limited function, numbness and tingling down my arms and legs, etc, and tried to move on with my life best I could. I couldn’t work as much as I used to, but I had to work, I had two small children to raise on my own. I had a full-time job and a college education to finish, so I didn’t use pain medication. I just took over-the-counter medication.
With determination and a go-get‘em attitude, I was successful. I did return to Dr. Iskandar for follow-up at the five and seven year mark. (The seven year follow up was actually with my son, who had been diagnosed with Chiari I malformation as well.) I was told that everything looked fine and that I must still be depressed. I needed to go see my family doctor to start on antidepressants again.
I went on with my life having daily, chronic pain, but I still had to do what I needed to do to survive. I continued to have evaluations for my symptoms. I was told that I had nothing wrong with me. In the summer of 2012 there was an unfortunate accident where someone was thrown off of my boat onto the top of my head, and my symptoms were exacerbated severely by the injury.
I went for evaluations, started my therapy again, increased my over-the-counter medications, and had another MRI. The results showed that I had herniated discs at the C5 through C7 level. The doctor told me I needed to have fusion surgery. Since I was seeing a new neurosurgeon I believed they were the expert, and that I needed to go ahead with the fusion surgery to get relief of my symptoms.
After the surgery in November 2012, my symptoms were worse than before, and have been since. I have seen the neurosurgeon who did my fusion surgery, who told me that it may just take more time to heal. I saw a neurologist in Marshfield who told me there is nothing wrong with me and that it was depression and stress causing my symptoms. My primary care physician has told me that there was nothing that I could do other than the home therapies that I had been doing, and the over-the-counter medications.
With further research on my own into Chiari, and with the support groups on Facebook that I am a part of, I decided to look into the Wisconsin Chiari Center. As part of one of my follow-up examinations, I asked my primary care physician for a referral to this facility in Milwaukee. After my appointment with Dr. Heffez, two hours worth of MRIs, a BAER test, multiple laboratory tests, and neurological tests conducted by the physician, it was determined that my first Chiari surgeon had in adequately performed my surgery back in 2001. My Chiari was never fixed.
The was the answer I needed verifying that my feelings and discussions with all of these other doctors were correct. I had felt that it was my Chiari that was causing my symptoms, but was constantly told that it was not the case. Dr. Heffez informed me that I would need to have my decompression done again.He would have to go in and fix all of the things Dr. Iskandar did wrong.
I found out I also have Tethered Cord Syndrome. It is a condition that is common with Chiari patients. It is something that should have been discovered had the other doctors listened to me when I asked for a full spine MRI.
I will now be going in for another surgery on September 1st, 2015. Dr. Heffez will be redoing my graft, reopening the dura into the cerebrum to make more room as I have compromised cerebrospinal flow, and he is going to place a plate into the lower part of my skull because the first surgeon took out too much.
The reason I am telling my story is so that anyone and everyone who is reading this will listen to their bodies. If you feel as though you are being told something that you do not agree with, stand up for yourself! That is something I did not do enough. Only you know how you are feeling. Even though I did tell my doctors I was not feeling right, they made me feel like I was crazy even though they really had no clue what I was going through. They had no clue about what Chiari malformations truly is.
I have been suffering for 14 years. I am hoping and praying, as are my family, that this second surgery will help me so I can live a somewhat normal life. The last six months to a year has been extremely limited. I am no longer able to lift any weight or enjoy the things I used to because of the extreme amounts of pain I am in, the daily headaches, and the dizziness I feel all of the time.
I am hoping my story will help someone with our condition. Take care of yourself, and stand up for yourself. Use your voice. Don’t let one person’s word be the last word.
Thank you for taking the time to read my story and letting my voice be heard.
Thank you Jen for sharing your story with us. Every story shared helps us be better advocates.
Stay Positive dear readers!
Too many times, people with an unknown condition face so much ignorance when we just want some help. A fellow Chiarian asked if I would share her story to help others understand what we go though.
Aylar Mousavi says,
I am writing this because no one should have to go through what I did at St. Michael’s hospital. I went to the ER because I had been vomiting for six weeks now. A medical student comes in and asks several questions, if I’m pregnant, and so on. He says we will perform some blood tests and go from there. He said in a weird, sarcastic tone that he will also be doing a pregnancy test as if I’m lying about not being pregnant.
I say sure. I wait another hour and Dr. Joel Lockwood comes into my room with my results and mentions nothing about my blood tests, He asks instead why I came into the ER. I told him because I had been vomiting for sis weeks now. I asked him about my blood test results, which he says are perfect. I asked him, “Am I pregnant?” He said no, and asked again why did I come to the ER.
Again, I tell him, I called a private clinic in Toronto. I explained my symptoms to them and they said I’m acute and shouldn’t wait for an appointment. I needed to go straight to the ER. Dr. Lockwood then said “You probably spoke to the secretary there. That’s why they said go to the ER.” I ask him if we should do a Cat Scan to rule out cancer. No, he says. It’s too much radiation, and you should ask your Gastrointerologist to perform a scope.
I asked him what if it’s from my Chiari, which I had to have brain surgery for. He told me, “From your symptoms, it’s not from your brain. We will do an ultra sound of your stomach area.” I demanded a better answer and he just left the room. I saw a nurse outside my room, and I tell her that my symptoms can be from Chiari since my brain tissue is laying low and my spinal cord is being compressed. She said “Not possible.”
I ask what she means by “not possible” and if she knows what Chiari Malformation is. The nurse laughed and said “I do know. Your brain cannot be herniated.” I ask for Dr. Lockwood, and she said, “I will ask him to come see you.” She then left the room, still laughing from what I said regarding my Chiari.
Someone else comes in, and says “We need this room. Go wait in the waiting area for your ultra sound.” I go to the waiting area and see Dr. Lockwood. I explained that I had an upright MRI recently in Los Angeles, which stated my brain is laying low, down to my C1 vertebra, and I have Craniocervical Stenosis. Dr. Lockwood said, “That’s not possible. You don’t have a herniated brain.”
I asked him if he knew what Chiari Malformation was, and he said “Yes, something to do with C1 and C2 vertebra.” No, I said. It’s a herniation of the cerebellum into the spinal column. He said, “Are you quizzing me?” I said, “No, I’m not. I am asking if you know anything about my condition.” He said, ” You don’t have a herniated brain or cerebellum. You would be dead, or not be able to walk.” I said, “Are you kidding me?! Take out this IV. You clearly don’t know anything about my condition, and I do not trust you.”
He walks me to the nurse where many other patients are sitting, and says sarcastically, “Take out her IV. She thinks her brain is herniated,” and laughs out loud. The nurse took out my IV and I asked where I could change into my own clothes. She told me to go to the washroom.
I change my clothes and ask a nurse what the doctors name was (Dr. Joel Lockwood). As I’m leaving, I tell Dr. Lockwood he should go back to medical school, research Chiari Malformation, and try to educate himself. He starts to laugh and tells everyone around him again that (laughing) “She thinks she has a herniated brain.” Another nurse comes towards me in an aggressive manor, and tells me that was NO way to speak to the staff.
I said, “What are you going to do?” She said. ” Walk you out.” I said “No, thank you. I can walk myself out.
I am asking you to please share my story. So many doctors and other medical staff are ignorant of chiari malformation. Many people with chiari die because they’re dismissed my medical personnel. I am extremely frustrated and in absolute disbelief in the way I was treated. No one should have to go through what I did.
Aylar, thank you for taking the time to share your story.
To all my Chiari friends,
A member of our community is having the worst time of her life. Her baby passed away three weeks ago, and she was in a very bad car accident.
She got hit head on yesterday and was airlifted UAB Hospital. Her right leg and ankle are crushed. She has Broken ribs, a bruised liver, fluid on her lungs, a ruptured spleen, missing teeth and a chunk of her lip had to be sewn back together. Teresa Corrine Stewart Taft has asked if we could help lift Peggy Lanier Woolbright’s spirts and fill her room with cards to show our support.
Even if you don’t know her or anything about Chiari, know that she is a human being that is suffering and needs some kindness and compassion.
Please help if you can. It just takes a stamp to help someone in their hour of need.
Cards can be sent to:
Peggy Lanier Woolbright
UAB hospital, Room 9212
1802 6th ave. S
Birmingham Al. 35233
Lets show Peggy that good people are out there and that we care for one another.
A Fundraiser was started for Peggy to help her and her precious family get through this tragic time in their lives.
I hope every one is having a relatively pain free week so far. Staying positive in the face of ignorance is a topic that is very close to my heart. When you have an “invisible” condition/disease, people will always look at you differently when you use a handicap spot, wheel chair, a cane ect. It can be especially hard on those of us that are younger. People for some reason like to correlate a wheelchair or assistance device with either being old, or having some form of outward showing condition.
In the news recently, there have been stories where the general public have taken it upon themselves to shame people using an assistive device because they see “nothing wrong” with the person using it. This is very prevalent when it comes to handicap placards for parking, or when you need a wheel chair at the store.
“Being handicapped isn’t always a wheelchair or crutches. Some illnesses manifest themselves internally and destroy the body from within. I have one of those illnesses” -Julie McGovern
I have run into this problem more than I would care to say. In my situation, I have a hard time walking any distance with out being in severe pain, and I can’t move my neck from side to side, so its generally hard for me to shop anyhow. Usually, I can make it from the parking lot to the store, but once in side, I need a wheel chair or motorized buggy. Not that it’s anyone’s business what I need to get around, but people sure like to make it their business.
My mom and I were at Walmart last week and today, and both times I had the same thing happen. Once I had gotten into the store, I had to get a motorized cart. As soon as I started in to the store, people started staring. I don’t let that get to me, but it’s when people start making comments I get upset or frustrated. People think because you need a wheel chair, and they don’t think anything is wrong with you, they can say whatever they please.
I actually heard a lady say to her friend, “I can’t believe she is using a buggy. Some people are so lazy.” That lady didn’t know me or anything about my condition, but she felt she had the right to shame me. I almost burst into tears. This kind of situation made me realize I needed to say something about it, and how you can turn something ignorant into a positive experience.
What I want my readers and the general public to know is that shaming is not ok. I know I would much rather have someone ask me why I need it, than to just stare, or make hurtful comments. If you run into this situation, use it as a teaching experience. Let them know its not ok to stare or make comments, but you understand your different. You have XYZ, and they can learn more about it via XYZ website. I carry “Pass it on Cards” in my purse from Chiari Gear and pass them out to people who want to know more.
There will be some people grateful to be educated. There will be some people who just don’t care, but If you can change one persons attitude on invisible diseases, then I consider that a win.
Just remember, you are all special, individual, and just as important as anyone else. You should never feel ashamed or embarrassed for having to use an assistave device. Keep your head up. ( That’s easy for me since mine is fused in place ) Those of us with these conditions don’t often have a lot of time on this earth. You should make the best of it and not let other people effect how you are going to live your life.
Stay Positive dear readers!