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Be Your Own Advocate

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co-written by IamAwakeNowTVM

Have you ever been afraid as you’re walking into the doctor’s office? You just had tests done and you’re afraid that your test will come back negative?  Most people hope, even PRAY for negative test results…’the cyst was benign, you don’t have cancer Mrs. B.’ or ‘the 24 hour heart monitor showed no problems, you’re heart is fine for now Mr. G’.  This is how it’s supposed to be…hoping that nothing is wrong because you feel fine.

There are many people out there, though, where this is just not the case. They know their bodies, they know something is wrong, and they feel pain…but they can’t prove it. They want a positive.  They are sent from one doctor to another, one specialist to another, each doing their own blood work, imaging (x-rays, CTs, MRIs), and other tests just to keep being told “No, I’m sorry Mrs. K.  There is absolutely nothing there that can be causing your pain.  Have you thought about seeing a psychiatrist?” In other words, it’s all in your head.  Are you going to take that?

For me personally, it took two years, one cyst, two surgeries, two GPs and two specialists to mention that I had Adhesions.  One of those general practitioners did blood work and x-rays looking for something that could be causing my pelvis/abdomen to hurt.  Of course, he found nothing.  I went back two more times with the same complaint, because the pain (at that point it was more of a constant discomfort) just would not go away.  The last time I went, my doctor was on vacation or for some other reason was out of the office and one of the other clinic doctors saw me.  He told me in a very antagonizing way that he had reviewed my chart and that the lab work and imaging that had been done previously had showed nothing, so he didn’t understand why I would repeatedly return claiming to have the same problem. I told him that I returned because ‘the problem‘ had refused to go away, so there had to be a reason for it; he in turn refused to listen.  I was informed that there was absolutely nothing he could do but to refer me to a psychiatrist.  I was so angry that he had blown me off the way he had that I was in tears as I was leaving… oh, but there was more.  To add insult to injury, as I went to check out, the receptionist (who had been a coworker of mine a few years earlier) told me in a low voice as she was handing me my referral (that I had absolutely no intention of using) “I just wanted to let you know that Dr. X just told me to add you to the clinic’s list of drug seekers”. I was floored…I hadn’t even asked for pain medication, just answers.  Needless to say, I never went back there again.  Once the pains started getting worse, I was able to describe them better, so this time I went to my ob/gyn.  He did some imaging because my abdomen started swelling besides the pain (which had gotten worse) and he found a cyst.  At first he tried to give it time to go away on its own.  When it didn’t, he scheduled surgery.  After that surgery was the first time I heard the word that now haunts me even in my dreams: Adhesions. He didn’t really explain what they were, just that he had cut them away so I would feel better. And I did…for a while.

It took another 3 years, two cysts, one GP and four specialists to admit that it was the adhesions that were causing my pain.  I moved to another city to go school.  When the familiar pains and abdominal swelling started, I went to the first ob/gyn in my new town.  He found another cyst and told me that I needed a total hysterectomy…(crickets chirping…I was only 27).  I respectfully told the old man that he had lost his ever loving mind if he thought I was going to agree to that, so to try again.  My next option ended up being a fertility specialist.  He did one surgery and it felt so much better afterwards (well of course because the pain was gone…p.s. There is a huge difference between the pain I had before my surgery and normal post-surgical soreness) so anyway, when the doctor’s assistant came by to check on me I already had clothes on and was laughing and joking around. The lady did a total double take to check out what was going on and asked me if I was the one who just had surgery.  I said yes and she was amazed that I felt that much better that fast.  When the doctor came, he told me that he had gotten the cyst and that I had adhesions, but that they were pretty bad and that trying to cut any of them “would have been too risky”.  The second cyst and subsequent surgery was basically the same.  I kept hurting a little afterwards, (not like now, but hurting just the same).  I mentioned it to the doctor and he checked for a new cyst, but there was none.  He told me that he had no idea why I was hurting if there was no cyst to be causing the pressure inside that I was feeling.  He said that the adhesions could be a problem, but that it was beyond his area of expertise and I should see an oncologist because they were the best surgeons – which I did – only to be told that he was very sorry, but he worked with cancer not adhesions. I wasn’t really sure where to go from there, so I decided to start researching these things called adhesions that everyone kept telling me I had. The information said that they could sometimes cause pain, and I had every single symptom mentioned there plus the recurring cysts, so I figured there was a pretty good chance that this was the culprit.  The issue then was finding a doctor who knew enough about them to help.

I thought I was the only one who had adhesions.  I thought that I was some sort of freak of nature (well, at least that I was abnormal) until I found an online support group just for people with adhesions.  Although the support group was based in Australia, I found a lady’s profile on there who lived in Alabama like me.  She raved about the doctor she saw who’s office just happened to be in my town!  I looked the doctor up online and the lady wasn’t the only one who raved about him.  There were positive reviews about him, the other doctor who practiced there, and even the rest of the office staff.  Then I found out that the doctor who founded the clinic had passed away.  So, I focused on the assistant-turned-primary doctor. He had the exact same positive reviews as his predecessor. So I said to myself  ‘Self, I have got to see this doctor.  Maybe he can get rid of these adhesions and my pain will stop” so, I called to make an appointment.  This was a ‘pelvic pain’ clinic.  That was perfect since what I had was pain in my pelvis (are you seeing how this is all fitting together?)  My appointment was actually three months away (pretty busy guy, must be a good sign) but since I had requested to be put on the waiting list for cancellations, it only took about 2 weeks to get in.  The rave reviews had been right.  He was thorough during the pelvic and physical exam, thorough in his assessment of the issues, he asked the right questions, and he listened attentively to my story.  All in all he spent close to an hour with me.  And after reading the reports from the previous surgeries, he said the one thing that I had waited five long years to hear…”You are covered in adhesions; that’s why you’re hurting so badly.” Validation. I even remember telling him that the doctors before him said that they didn’t know why I was hurting because they couldn’t find anything on the tests. That’s when he explained that adhesions can’t be seen on any test.  The only way was by seeing them during surgery.  I still wanted to make sure so I asked him why they made me hurt so badly.  He explained that basically my insides were glued together…organs stuck to other organs stuck to bowel stuck to the abdominal wall.  Every move I made would pull the muscle which would pull the adhesion which would pull on one of my organs, and organs just aren’t made to be pulled on. I asked him if he would be able to cut them out like before so that I would stop hurting.  He kind of got this sad look on his face and told me that he was a good surgeon, but what I needed was a GREAT surgeon.  He told me that by this point, the adhesions were so bad and so much bowel was involved that it would be difficult to find a surgeon willing to operate, but he also said that in the meantime he would try everything he knew to do to help me control the pain until surgery was an option again.  He said “It will be a long bumpy ride, Joy, but I will be here with you the whole time.” I was so happy but so scared at the same time. I had a disease that no one knew about; that doctors wouldn’t admit to.  That disease was causing my pain and discomfort and I was just going to have to live with it.  There was no definite cure, only managing the symptoms unless I could talk someone into cutting out the adhesions, and then there was no guarantee they wouldn’t grow back.  But, on the other hand, I finally knew what was wrong with me, I had a doctor to validate the pain I had felt for so long instead of trying to send me to a shrink or say I was a drug seeker and, most importantly, I had a doctor that cared about me.

The moral of this story is that you have to be your own advocate.

 

You are your best Advocate

Knowledge Builds Confidence

Confidence Builds Enthusiasm

Enthusiasm Advocates!”

Listen, nobody’s going to do it for you.  Do the research, do the leg work.  Get all of your medical records together.  If you have a smartphone or a tablet, put the records on there including any x-rays, CTs, MRIs and then make sure to take it to the doctor with you.  If a doctor tries to say he hasn’t seen the test results…show them to him, right then and there. These doctors are working for YOU, not the other way around.  So if you go to a doctor who doesn’t listen to what you have to say, call them out on it – or better yet, just don’t go back.

 

“I have actually stood up in a provider’s office 5 minutes into a ONE HOUR appointment, reached out my hand to shake his, and said this: ‘I refuse to have my medical conditions and my intelligence insulted.  Would you mind having your receptionist refund my co-pay please?’”

Find a doctor that will listen.  You know your body better than anyone else.  If you know something is wrong, find a doctor who cares enough to find out what.  If you don’t know where to start, but are reading this post, then you are already in the right place…the internet.  Google your city and the type of specialist you need and go from there.  Look up each doctor listed individually.  There are lots of websites that provide reviews and other information you might need such as the hospital they are affiliated with, their address, and their phone number.

Lastly, the prescription drug abuse epidemic has made it nearly impossible for people to get relief from their pain.  Unfortunately, doctors DO look at your appearance and your attitude when trying to figure you out.  If you are too shy, too pushy, act like you are trying to “play” the system, look like an “abuser”, or especially if you don’t have much evidence to “prove” your pain, it is more likely than not that you will be overlooked and not provided appropriate pain relief.  I know that when you hurt, the last thing you want to do is get dressed up to go to the doctor.  You don’t have to.  But you can’t just roll out of bed (without washing your face and brushing your hair) and show up in your pajamas.  You have to be confident in your self and in your story.  But most importantly, be honest about your pain and your pain levels so that you can get the best pain management possible.

The thing is, I was lucky.  I only had to wait five years to get my diagnosis.  There are people who have waited 10 or 15 years…some take more and some unfortunately aren’t diagnosed until autopsy.  Don’t be one of those people.  Do your research, be your own advocate, and find a doctor who cares more about his patients than counting his money at the end of the day. Most importantly, be honest with your doctors so that they can help you.  If you already have a diagnosis but don’t believe you are getting the treatment you deserve, the same goes for you.  The doctor is supposed to work for you.  Find one that will.  Honestly, it will change your life…and for the better.  It will be worth all the work you put into it.

Edited on Jan. 1, 2014

A Little Bit of Peace

For the first time in a long time, I feel loved again. M- and I had this heart to heart tonight. We talked about how I don’t want his pity when I say I’m hurting or that I’ve had a bad day… all I want is for him to hug me and say he understands. That’s it. No more, no less. I don’t expect him to fix me. He, however, is in ‘fix me’ mode.

We finally found out what adhesions are called in Spanish. I looked everywhere! My one trusted site for all things translated ( which you can find here if you ever need something translated…DO NOT USE GOOGLE TRANSLATOR!!!) actually had it right, but who believes me anyway? So, we found out because it turns out that his new (well, not that new…4 years, but that’s considered new in his family) sister-in-law just so happens to be a nurse…and quite educated at that. I don’t know exactly how the licensing compares, but she’s at least an RN if not higher up than that. So, when we went to pick her up from Memphis (don’t ask- that was one road trip I was completely against but got indoctrinated into going (“because it’s the right thing to do. She just got here. You’re the hostess. She’s family.” yada yada yada…and yes, I have recovered from it…finally) she had wanted us all to stay for dinner there at her cousin’s house, but we couldn’t because of little ol’ me :(. That’s why later we got on the topic because I was trying to explain to her that I was sick and had just been convinced into making the trip anyway, but that just the trip was hard on me. She wanted to know why and I told her I didn’t know what they were called in Spanish (she doesn’t speak English) so I talked about them. Right away she knew what they were and of course, what they are called…”adherencias”. See, you didn’t know you would get a Spanish lesson reading my blog, did you? Whew, I have got to learn how to tone down the talking…writing…in circles bit…I wear myself out! I can only imagine you guys having to read it. But, this is how my brain works. Sorry.

So, back to the point. We learned what adhesions are in Spanish (echo, echo) so M- gets on the computer and spends like hours…probably 5 maybe 6…looking up adhesions, reading about them, looking up doctors who specialize in adhesion removal. He found a specialist in Puerto Rico, Spain, and said something about Cuba until I reminded him that we still weren’t allowed to go there (although I do agree that a lot of damn good doctors have come from Cuba…I’m just saying…). He watched videos of the adhesion removal being done. That’s what surprised me the most was him watching the videos. He’s kinda squeamish about that kind of stuff. Now that he has ‘researched’ adhesions he has decided that I AM having surgery done because that is the only thing that will “fix me”. I try to remind him that there is a 50% chance that they will just come back again, but no! That is the ONLY choice in his mind.

To get back to what I was saying at the beginning, we sat down and REALLY talked. We talked about how much it hurts him to see me in pain. How it kills him inside to see me cry because he feels completely unable to make me feel better. He has learned that the only way to deal with this (because guys can’t show weakness, you know) is to get mad, or to try to “pass” some of his strength to me (which usually just ends up in him saying the wrong thing and making me mad which would just make him mad and say the things that would REALLY push my buttons and really set me off…you get the picture). I told him that I completely understood. That besides the pain, mentally I’m dealing with trying to accept that this will be my life…for the rest of my life…or if it is worth risking another surgery. I deal with thoughts at times that it would just be easier to end it all than to suffer like this, but then I counter that with HELL NO, I can beat this, I can handle it! I deal with thinking that he would be better off without me, he could just find a “normal” woman. To that he countered that he would never leave me like this, that I’m his soulmate. I wholeheartedly agree. I believe that God sent him to me because he knew I wouldn’t be able to deal with this myself. But at times I feel that I have brought much more suffering into his life than joy and that it is unfair to him. He disagreed.

Anyway, this banter went back and forth (I even saw a tear that he tried to catch before I could see) for well over two hours. We ended up finally understanding each other for the first time in close to a year. Around 2:00 am we went to sleep in each other’s arms instead of him turned one way and me turned another (of course we always end up that way anyway just because that’s how we sleep. But the point is that when I woke up at 4:00 am, we were still holding each other and it made it all worth it. Those two hours of him holding me made the whole year of arguments worth it. I have him back. I don’t know if he was lost in himself with all the stress of having to deal with me: seeing me in pain, seeing me go in for various surgeries and not knowing if I was coming back, seeing me emotionally torn in two. I think it was all of it. I better understand his side of things and at least for right now he understands mine. I don’t know why we were able to have this talk tonight when I had tried so many times before, but I thank God we did. I’m sure he had a hand in this one too, because M- even said that we needed to go back to church. For so long I have been unable to sit on those hard pews, but now I have a cushion I can take. I argued at first that I thought God had abandoned me a long time ago and I wasn’t sure if I could do it. He said that was exactly why we needed to go, because sometimes he felt the same way, but that both of us should know better than that. Maybe it was us who had abandoned Him. Maybe he’s right. All I know is that for tonight, all is right at my house. I have learned to live in the moment because that’s all we’re really promised. I feel some peace in my soul for the first time in a long time. Maybe I wasn’t abandoned after all…that’s all I’ve wanted for quite some time now…just a little bit of peace.

Late Night Ramblings

Apparently I am having knee surgery tomorrow.  They dropped it on me today that it will be tomorrow.  I am absolutely not worried about my knee.  If I can handle abdominal surgery…many abdominal surgeries, the knee is a piece of cake.  I’m even supposed to be going to therapy the very next day (which is how I happened to find out that surgery is tomorrow…the therapist called to set up my appointment for Wednesday…how funny is that?)  I am actually glad that it is being done so soon.  There have been changes made to my insurance that go into effect on October 1 (a whole other post topic) so I am glad they are doing it before then.

Anyway, it is late and I can’t eat after 12 so that means I better get something in my tummy fast!  Plus, I need my rest before tomorrow…tomorrow…I still can’t believe it.  Anyway, sorry to Tammy for not giving her any warning (Sorry my adhesion sister!) but that’s life…well, that’s what people say… lol! that made me think of that song.  Now it’s going to be stuck in my head for a while.  I guess there are worse songs that could be stuck in your head…like “The Wheels on the Bus” or “A Hundred Bottles of Beer” or even worse yet “Row Row Row Your Boat” because you try to do the second and third parts in your head and then it just gets complicated.  Oh, and you’re welcome I mean, I’m sorry if now you have silly kid songs stuck in your head (hahahaha).

Sorry people.  I don’t know where that rant came from. Problem is that most of these posts I just sit and type and let the spell checker catch things for me.  That leaves you dealing with the circles that form my thought processes.  I am however co-writing a post with another blogger that I think you will like.  It is taking a bit longer because, well, when you work with someone you don’t want to let them down so you check and re-check…well, I do anyway.  Actually I got most of it written pretty fast (hey, I can only sit up for like 2 hrs at a time max…I have to take advantage of that time). The difficult part is fitting his writings into what I wrote and do it in a logical manner.  That’s where my perfectionism comes in.  That, also, is a topic for another day.  You guys know how long winded I can be…I’m just trying to save your eyes from looking at the screen for too long.  And it gives me ideas to write about later.  Usually when I don’t write, that is why…I have nothing new to say that you haven’t already heard i.e. I’m tired/hurting/frustrated with M-/going or just got back from the doctor…(I think you get the idea).”

So, this time I really mean it when I say goodnight.  Wish me luck.  I am already dreading the crutches.  Those things will wear you out before you know it…and that’s when you’re not worn out all the time anyway.  I should only have to use them for a few days, but still…

Goodnight friends.

 

To Share or Not To Share

When I began writing this blog, I chose to do it anonymously.  That way, I would have the freedom to write what I wanted about who and what I wanted and not hurt anyone’s feelings.  Yesterday, I decided that I was ready to branch out and reach more people, but not quite ready to let the people I actually know in on it. So, I opened a new Twitter account.

My old Twitter account would have re-posted anything I posted on it onto my Facebook page as well.  I don’t know when or where I set that up, so of course, I didn’t know where to undo it, Therefore, I have a new Twitter account, one I plan to use because I never used the other one.  The people I know don’t care if I’m feeling poorly.  They don’t care if I overdid it the day before and now are unable to get out of bed, and then have to stay in bed for a few days.  I just don’t fit into people’s busy lives and I can understand that.  However, that is my life now and if I tweet that I’m on my way to see the doctor or I tweet the date of my knee surgery I want it going to someone who cares.  Someone who understands and therefore the news is either important enough for them to care but not so important that people are going to want to come from another country to “make sure things (things meaning M-) are ok”. Actually, that wouldn’t be so bad except I don’t think that his family understands the severity of my illness. Some may even think that I’m making it up for attention since I have to “be good” around them. Of course I may be wrong, but that is how it felt the last time we were all together (see ‘Road Trip).

After I created the new account, however, I realized that I had no friends to add.  I couldn’t, for example, create a new Facebook account because everyone I know is on the other.  Of course I could create the account, but if there’s no one to interact with, then what’s the point?  The thought made me very sad.  This was last night (well, night before last considering I am writing this and it is almost 5 am) at approximately 4 am when the aforementioned sadness hit, so I was able to cry.  And I did.  I cried myself right back to sleep.  So hey, if you’re looking for a cure for insomnia, save all that pain and frustration until nighttime and then let those tears loose.  After a good 30-45 minute cry I am out every time (especially if I’m lying down and crying into the pillow).  I know it’s an odd suggestion, but then I’m odd…my regular readers should expect some quirky-mess from me by now.  When I woke back up at 6:30…wait, I need a disclaimer: (Disclaimer: I didn’t say you would sleep for an extended period of time, just that it would put you to sleep.  I should also let you know about the extremely puffy eyes you’re gonna have when you wake up after that 30 minute cry.  I don’t want to be blamed for them.  It just happens people…oh yeah, any advice given anywhere on this post is from my experiences and I don’t always do the right thing so you should probably think for yourselves or ask a doctor…end of disclaimer) lol.  I should probably put a disclaimer permanently on my page somewhere…I’ll work on that.

So, after a good cry, and a little sleep, my mind started trying to mentally go through everyone on my Facebook friends list to see who I could trust with my blog (there has only been one person so far). Of course, all of M-’s family is out of the question (I mean, they’re in-laws and they are going to take his side) which therefore would leave me with the need to edit the posts I already have and to watch my subject matter in the future by not mentioning him again except for to say that he’s great about taking me to the doctor and caring for me when I’m really sick (both of which are true by the way).  But I can’t do that.  My whole point in this blog was to help other people (and hopefully myself along the way) and to let people know that they aren’t alone, that there are countless numbers of us ready to take you and *softly* squeeze you.  there are people who will understand and be there when you need to vent.

I can’t and won’t change what I’ve written because I’ve written from the heart.  And besides, relationship issues can arise with any loved one for any number of reasons, but especially when one of them suffers with chronic pain.  It is hard for them to understand a pain that they can’t feel or see.  Our pain is a never-ending cycle of suffering (physically and mentally) and as much as they might like, they can not do anything to help us…can you imagine how hard that must be for them?  Add to that the fact that “people with unrelenting pain…also have trouble sleeping, are often depressed, anxious and even have difficulty making simple decisions”. That is a lot of burden for any relationship to bear especially a romantic or patient/caregiver relationship.  The topic of relationship issues is not only applicable to the discussion of pain, but also to the examination of how emotional issues can worsen physical pain. Therefore, I will not change my blog so that others can read it.

I believe I will carefully go through my “friends” list and pick out a few who really wouldn’t give a damn one way or the other and then go ahead and then either let them know about this blog or my new Twitter page where I will be “tweeting” each new post. If they want to read it ok and if not ok. But I feel that people I know need to know what is wrong with me. Adhesions is an illness that far too little people know about, but far too many suffer from. Some cases are more extreme than others and I just happen to be on the extreme side.

I think what I mean to say with all this rambling is that I’m tired of hiding here at home. I want my best friend since elementary school to know why I haven’t been around more to spend time with her beautiful twin boys. I have been hiding…because I didn’t want anyone to ask me how I am. This blog is the best way to try to explain to people what I go through. I can sit here and wallow about the fact that no one cares, but if I don’t let them know – don’t give them a chance to understand – then I won’t ever know if they care or not. I do know that if I give them a chance to read my blog, then conversation can resume and I won’t have to answer that awful question “how are you doing” that so often gets asked because it’s just what you do and so often gets answered “fine” to keep from having to explain otherwise.  If they’ve read, they’ll already know. And I will know who really cares. However, if people are too busy in their lives to worry about mine that’s ok. I have met people here who really do care, who write me and ask me how I’m feeling and when I say not great they completely understand. Do I really need any more than that?

That’s a big job…who says I don’t work?

I went for my two-week post-op appointment yesterday.  The doctor walked into the room shaking his head.  He was still amazed at the extent of the adhesions.  I asked if I have what they considered a “frozen abdomen” (already knowing the answer) and he said “no, honey, yours is more like “Ice Age abdomen” with a big nervous smile on his face.  I am convinced that he still can’t believe that we made it through surgery without any serious complications.  It probably had something to do with Dr. L telling him he was a crazy SOB for even trying to operate on me…who knows?  Have I mentioned I love my doctor?  Who else could tell you ‘no, it’s much, much, much worse than that’ in such a nice way?  He makes me laugh.

So while I was there we discussed the Mayo Clinic’s Pain Rehabilitation Program. I told him that I was looking at my options of whether or not to try the “übersurgeons” otherwise known as specialists in adhesion removal (but ‘übersurgeon’ is so much more fun to say :)) or whether to manage the pain.  Pain management can be broken down into two categories: narcotics or sans narcotics.

So far (going on 3 years now) the “pain management” route hasn’t quite been cutting it for me.  I have done physical therapy (which actually does help a little (a very little) with the pain but improves my strength and improves my fatigue (meaning that I can do more than take a shower before I feel like I’m gonna pass out from exhaustion).  My first nerve block actually had nothing to do with my adhesions.  A week before my first appointment with the pain management doctor I broke my butt.  I know you’re supposed to say tailbone but screw tailbone.  Your butt is completely useless.  I mean, the most common thing I do with my butt is SIT ON IT and that is completely impossible without excruciating pain until it heals or you have medical intervention in the form of a nerve block.  That particular block worked like a dream!  By the time I woke up from sedation I was sitting up (still don’t know how the nurses managed that one, but ok) and was automatically like “wow, M-, I’m not hurting” and then I tried to stand up and sit back down to check, but someone grabbed me (I don’t remember who…geez I had just woke up) and told me it might not be a good idea to stand up yet…and they were right.  However, when I fell back into the chair (which should have hurt like hell) nothing hurt.  Complete success.  My second procedure was a SI joint injection.  Did it work? Nope.  The third was a hydrogastric plexus block.  It helped for about a month.  I had more energy and was more active in that month than I have been in years. I definitely wasn’t 100% but I have never asked for 100%…I just want a piece of my old life back and that was the closest I have come so far.  The fourth was another HGP block and I got maybe two weeks out of it, but it wasn’t like with the first one.  It didn’t reduce the pain as much.  The fifth was a radio frequency (RF) treatment where they “shock” the nerves.  They claimed I would get 6 months pain relief with that one…never happened.  Not one day.  I have also of course tried the pregabalin and other non narcotic pain relievers and of course the narcotics.  I have a love/hate relationship with them.  I love that they take the edge off of the pain, I hate the “fuzzy” “not quite there” confused feeling they cause as a side effect.

So, looking for sans narcotics options, well there aren’t many.  But the one that I have found and have talked to one of their “graduates” and seems to have a very high success rate is the Pain Rehabilitation Program at the Mayo Clinic.  Basically, they “take a behavioral therapy approach” in teaching you how to cope with your pain.  Some of the components of what they teach is: relaxation techniques including mindfulness; physical therapy (exercise); occupational therapy; nutrition; biofeedback practices; and psychological counseling.  They also review your medications and if possible ween you off of or reduce your narcotics.  This would be a good thing to try because I have always said “if I could just have a piece of my life back” and giving me a clear head and fully functioning mind seems like a damn good place to start.  Well, you have to start somewhere.

Meanwhile, back at the doctor’s office, after a quick check, I was cleared to go ahead with my knee surgery ( Yay! Fun!  Can you hear the sarcasm?)  Seriously, though I am not worried about knee surgery a bit.  Piece of cake.  I also had the doctor talk to M- a little bit about chronic pain and the fatigue that tends to accompany it.  Oh, and also touch on the fact that I AM NOT A DRUG ADDICT!  I may be medically dependent, but there is a HUGE difference between that and addiction one key component being I DON’T GET HIGH OFF MY PAIN MEDS!  Does it seem that I am a little sensitive on this topic?  Well hell yes I am.  I don’t want to be taking the shit in the first place, so don’t turn around and insult me by saying the above statements.  Anyway, they talked.  When M- brought up the ever-popular statement “well I’m tired when I get home from work too” the doctor told him he was trying to compare apples to oranges.  He said ‘it’s not like Joy is looking for a ‘free ride’ or is being lazy. Chronic pain sucks your energy away. It eats at your emotions and affects you deep into your soul. It doesn’t matter if it is headaches or pelvic pain or back pain. You do tire faster and you do have to learn how to conserve energy.  Even just taking a shower can exhaust you.  The medication she takes does have side effects but doesn’t make her what you know as high.  It is just so that Joy can get up in the morning and not suffer all day. It doesn’t give her energy. She has to learn to work with what she has.’ (I didn’t use complete quotation marks because that is what he said to the best of my memory, possibly not in the correct order.  I mean, I didn’t go in there with a tape recorder or anything…hey I probably should have done that so that I could play it each time M- slips and says the wrong thing…nah.) Anyway after my doctor was so generous to take up clinic time to play couples counselor, M-and I still can’t talk about pain without him trying to compare it to his own pain or his pain tolerance being better than mine or ….  He claims that he did however get the part about the fatigue.

Geez.  I guess it really is all about what you want to believe.  And he can believe whatever he wants.  As long as he doesn’t say things that bother me and therefore get in my way.  I have too much to do right now.  I have to figure out how to live the rest of my life in the best way, most healthiest (yes I know you’re not supposed to use most and -est together but I want YOU to get my point!) way, and with the least amount of suffering possible.  That’s a big job…who says I don’t work?

 

EndoWomen

ENDOWOMEN

I have a big announcement for all of my EndoWomen out there. EndoWife is officially launching an online peer support group aimed at understanding our disease through fellowship and raising awareness for the disease as a powerful union.

Millions of women around the globe are affected by this illness and yet there is no cure. There are almost no support groups. There is no understanding. I refuse to accept this. In coming together as a group of strong EndoWomen ….

to keep reading………EndoWomen.

How to Understand Someone With Chronic Pain

Another reblog…
Thanks again to Zyp Czyk @ http://edsinfo.wordpress.com He always find the good stuff.

EDS and Chronic Pain News & Info

Finally – a wonderful how-to article that explains our pain to normies!

http://m.wikihow.com/Understand-Someone-With-Chronic-Pain

This is the first time I’ve seen such an accurate description of the appropriate response to someone in chronic pain. Kudos to the writer – he/she definitely knows this subject intimately.

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Coping with pain

Reblog…

EDS and Chronic Pain News & Info

Putting a human face on chronic pain – by Angela Yang

Pain is no stranger to me. Last year, I did a research project on chronic-pain patients and narcotics. Beforehand, I’d opined, brashly, “Doctors prescribe pain medications because it’s the easy way out.”

But when I visited the patients in their homes, I saw how crippling chronic pain can be. I learned that it can arise after losing people or things you love, or not being able to do things you once could do. Chronic pain robs people of jobs, family, self-worth, identity. It can tear the heart and crush the soul.

Here’s the problem:
My mentors say, “The goal isn’t to eliminate pain; it’s to cope with pain.”

But what does it mean “to cope with pain”?

Some of us with EDS ( Ehlers-Danlos Syndrome, a genetic connective tissue disorder) have such loose joints that any upright position causes…

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