My Week Away From Home

I just spent a wonderful week away from home at my sister’s house. I really needed the time away and I had a great time with my sister, my niece and grandniece, and nephew. I suppose the highlight of the week was my grandniece, who is 18 months old and one of the smartest, most beautiful babies you could ever meet. No matter how bad you feel, a simple look from her big blue eyes leaves you with a big smile on your face. I found that out the hard way.

Towards the end of the week, my sister ended up in the hospital to have a kidney stone removed that was stuck and couldn’t pass. Since I was staying with her, I ended up spending the next two days and two nights with her, my niece, and grandniece at the hospital. If you think hospital beds are bad, try the uncomfortable recliners. Add to that multiple trips all the way to the other end of the hospital to the cafeteria for food and I was more than exhausted. My pride was the only thing that kept me from asking to borrow a wheelchair on the second day. The funny thing was, that no matter how bad we felt or how tired and cranky we were, just having the baby there kept us going. Well, she definitely did for me. To be honest, her mom was a little frazzled by the end of the hospital stay.

I am still recovering in bed from those two days, but all in all the week gave me time to think about things and put what’s been bothering me in perspective. Even though my sister has not always been there for me when I was in the hospital, it feels good to know that I was there for her. It has reminded me about how important family is and how they usually are there for you, especially when you need them the most.

Guest Post: Gemma

Image credit: englishwithatwist.com

 

I recently posted on my Facebook adhesions group for people who were willing to tell their story(s) about adhesions. This is the first response I received. I am so excited to be able to bring you other “voices” of adhesions or ARD (Adhesion Related Disorder).  So, without further adieu, this is Gemma’s story.

This is my story.

At the age if 16 I was forced to had a termination following which I suffered a really bad infection. Exactly 12 months later I was rushed into hospital with unexplained abdominal pain. I had this on and off for a few years. At the age of 20 I was referred to a gynaecologist who did a laparoscopy where he found my fallopian tube was attached to my bowel.  I also had polycystic ovaries which were drilled. I had trouble conceiving but after some treatment finally conceived after 3 years. After the birth of my daughter I suffered extremely painful and heavy periods but no other pain.  I underwent a laparoscopy to burn the nerve endings to my womb away. Following this i conceived with my son. After the birth of my son my periods were even heavier so they agreed to burn the lining if my womb away but this was unsuccessful and the following year I underwent a partial hysterectomy at the age if 28. After this I continued to experience pain and the following year they operated to remove my cervix, they did this by keyhole and found I had extensive adhesions but they would not touch them as by keyhole it would be too dangerous.  I was put on morphine for pain and sent home.  The following year I went back for laparotomy and lysis of adhesions. At this time they found my bowels, bladder and ovaries were all stuck together and attached to my abdomen wall. All this was cleared up and put back properly. I was pain free following this for 8 months,  however they returned and for the next 4 years the pain continued to increase and was soon back on a morphine substitute.  Earlier this year I was referred back to my gynaecologist who sent me for an MRI scan which showed my ovaries were attached to my bowel and my bowel was twisted.  He agreed to operate but referred me to a bowel surgeon so they could operate jointly.  I had surgery 8 weeks ago, they opened me from my belly button downwards, removed my ovaries, fallopian tubes and cleared up the adhesions.  Pain has greatly reduced following surgery,  until this week the pulling had gone, however this has returned along with the constant abdominal / back pain and I know the adhesions had returned. I also know that I cannot have any more surgery unless an emergency and have to live with adhesions for the rest of my life.

Another Friendship Lost…

I don’t know what feels worse today…me or my broken heart.

I have had a low-grade fever every day since Sunday. Yesterday I called to let the doctor know that I had forgotten to tell him about it at my appointment on Monday, but at the time it was high too. Just now when I checked it was 99.8. That is actually a little higher than it seems because my normal temp is 97.whatever instead of 98.whatever. I thought about driving to the doctor, but with my head spinning, that probably isn’t a good idea. I don’t know what is going on. All I know is that this is unusual for me.

I sent an email yesterday to an old friend of mine. Actually, she is the one that I got my two girl dogs from. A short time ago she made a leap of faith and took a job in Boston without knowing anyone there or having a place to stay. She has made stranger things happen, so I convinced her that it was a chance worth taking. She is now in a great job there and as far as I know doing well. She has texted me a couple of times, but never an email although I have pleaded for her to write me and let me know, well, how things have been for her since she moved. She is either too busy working or at one point even said to wait until she had internet at her new apartment because she didn’t want to write an email on the phone. So, yesterday, since Bailey is back home and healthy I figured it was time for us to catch up. Even if she didn’t have much to say to me, she could at least read the email. I put the subject line as “Bailey” but I told her about my two surgeries and how I was doing better. I told her about this blog (although to be completely honest I never figured she would take the time to read it, but I hoped she would).

She wrote me back today

“Not gonna lie. I’m having a difficult time even reading this. Due to the subject line. I can’t handle any more bad news so I’m gonna pretend I didn’t get it until another day. I love you.”

Really?  The subject line?  We haven’t spoke in like 6 months and she refuses to even read the email. I burst out in tears. I understand that for whatever reason she is going through a hard time (probably work) but who doesn’t read an email from a good friend. A friend who took your dogs when you decided to travel the world so that the shelter wouldn’t put them down. A friend who let you stay at their house for over two weeks wiping your tears because you were having family and job problems until you decided that it was time to spend 3 months in Brazil. A friend who is sick and at home and just might need you. That is the “friend”‘s email that you refuse to read? So, I wrote her back saying this:

“You know, H***, I guess with all your new friends there, you don’t care about the old, sick ones here. I have been needing to talk to you for a while, but you were busy or couldn’t write an email on your new phone…I get it. Bailey WAS sick but is FINE now. I’m the one who is STILL sick and friendless. Do me a favor and don’t read the email. I put that as the subject line hoping that you would take some time out of your busy schedule to read it…guess I was wrong. It’s a mistake I won’t make again.”

So, chalk another friendship lost to chronic illness. You would think that I would be used to it now, but I’ve never had anyone be so blunt. They just slowly stopped calling or visiting or writing. I guess it is my own fault, but you know, with friends like that who needs enemies? Oh, no, I had forgotten about one. When I finally got up the courage to write something on Facebook about being sick, I did get a few replies from some old friends. When I posted “The Spoon Theory” in Spanish for M-‘s family (who I call my family) do you know that not one person responded? A few asked him about it, but not one of my “family” had the decency to respond. I think I will stick with my WordPress family. You guys always understand and almost always comment. At least I don’t feel so alone.

 

Bad Office Visit

Thursday’s post part II…

Health-wise, I am doing better.  Physical therapy is finally starting to help (it always takes a while for you to get over the soreness) and I am feeling stronger.  Last Thursday I went to the pain specialist.  That is a story in itself….I’m trying to decide if I want to tell it…ok, you pulled my leg.

So, at my pain clinic, a “Comprehensive Pain Clinic” (meaning that everyone works together to make sure that you receive the best health care possible…) the doctors see you on the initial visit, set up a ‘plan of action’ and if procedures such as nerve blocks are involved, they perform those.  During the monthly ‘check-up’ visits, you are usually seen by a nurse practitioner or a physician’s assistant.  Well, I have formed a very good relationship with one of the nurse practitioners.  She listens to what I say, takes into account the medicine’s effectiveness against the side effects, and (a very rare quality for someone in the medical profession to have) she realizes that I KNOW MY BODY.  I know when something just isn’t right or when things start to get better.  Well, last time I went to my appointment, I was seen by a physician’s assistant that I didn’t know instead of my nurse practitioner (haha notice how I say ‘my nurse practitioner’…I would almost rather see her than the doctor…she’s great!).  Anyway, I was seen by someone else who put me on the max dose of Lyrica (which is almost enough to put an elephant to sleep) and when I got my discharge summary for that visit, I noticed LOTS of errors.

This month’s visit (Last Thursday) I was seen by yet another PA (physician’s assistant).  She didn’t seem to want to worry with the discharge summary that I brought back from my last visit full of highlighted areas where I had found errors.  I had to repeat 3 times the types of surgeries that I had just had and the dates.  She asked about trigger point injections (which my ob/gyn-specialist in pelvic pain – gives me…and always has).  I gave her the dates of my trigger point injections.  Then I start to tell her how the Lyrica is just not working out for me.  I have to continue to take it per the neurologist, but not at the dose they had me on.  I wanted to go back to the dose the neurologist had me on.  Then I asked her what type of procedure/nerve block/etc. they had in mind for me since I was done with my surgeries and the last one didn’t work.  (Let me stop a minute and explain that the ‘plan of action’ was to get me to a point where I no longer had to take narcotic pain medication.  That is why we have been trying different nerve blocks and other procedures.)  So, the PA is completely confused as to why I would want another procedure done if I had just gotten trigger point injections done.  Well, she asked.  So I tried to explain to her that my adhesions are so bad that there is actually muscle involvement which is why we do regular trigger point injections for the stiff and sore muscles, but that it has nothing to do with my normal “adhesion pain”.  Well, I guess she decided that she wasn’t going to receive lessons from a patient, so she stands up, yells “I know what adhesions are thank you very much” walks out of the room and slams the door….(crickets chirping…)  I was speechless.  I could not believe that a medical professional could be so childish and rude to a patient.  I sat there for a few long moments trying to convince myself that what happened was real.  I considered writing a letter to the medical board.  I considered not doing anything (and if you believe that one, you still don’t know me very well, do you?).  I opened the door, walked out of the room and right up to the ‘check out’ lady (she just happened to be the closest employee to me).  I informed her that I was going to continue to sit right there in that room until one of the five or six doctors who work there or my nurse practitioner were able to come in and perform a cordial visit.  I informed her that the lady who had just left my room was incompetent as far as my medical needs were concerned and instead of leaving and asking for help, she yelled at me, left, and slammed the door behind her (I think the ‘check out’ lady actually heard/saw her slam the door, because she was right in front of the door, so I guess that corroborated my story).  I did not wait for an answer, I turned around, went back in my room, and sat waiting for someone to come in.

It took about 10 minutes for the clinic manager (who, by the way, is not a doctor, but a business man in charge of making sure that professionalism is maintained).  The clinic manager asked me to explain what had happened.  After telling him, he apologized like five times wanting to make sure that I understood that this was not the norm there and (after I mentioned looking for another doctor) he said that the last thing that they wanted was for me to find a new clinic.  He left me his card so that if anything further happens I am able to get in touch with him directly.  That was nice of him and I must say, completely unexpected.

Next, my nurse practitioner came in.  I told them both (the manager was still there) that I have a complex history.  If the PA or NP is only given 5 or 10 minutes per patient, that time needs to be spent discussing treatment options and compliance.  If I have to see a new person each time, then that time is spent on a medical history that absolutely can not be told in 10 minutes, leaving no time to discuss the treatment plan, side effects, or possible changes in medication.  I told them that if they wanted me to continue to go there, then they were just going to have to schedule me for when I can be seen by the doctor or the nurse practitioner.  Both agreed.  The manager left, and the NP and I were able to discuss my goals and priorities and which ones were and were not being met.  We discussed side effects and possible new treatments that would reduce the side effects of the other medication and get me to where I need to be to reach some of those goals.

After having a “normal” visit, they sent in a girl to go through my chart and correct all of the discrepancies that had been found.  We went slowly and made sure that medicine dosages were correct, that diagnosis codes were correct and that diagnosis that should be listed were and ones that shouldn’t were taken off.  Right before she left (by this point I had been there over 4 hours and the clinic was about to close) my doctor (the one I saw on intake and right before they put me nighty-night during procedures) actually came in the room to also apologize for the rudeness I had experienced and for the discrepancies in my chart.  He assured me that all diagnosis would be checked and corrected and that I will be provided with the copy of my medical record since my first visit there at no charge to me.  Well yeah, that’s the least they could do…

Although the visit started off horrendously, it ended on a good note.  They made sure to correct all mistakes and to make sure that I got the medical attention that I deserved.  Since that visit, I have felt much better.  They lowered the dose of Lyrica, which allows me to stay awake during the day and to sleep better at night.  I also started a long-acting medication to see how I would tolerate it.  So far, it’s doing great.  I will go back in two weeks (well, one week now) to discuss the results of the medication change and to see what I think about completely changing to it.  Also, they will be doing a second caudal (nerve block on my tail bone…I broke my tail bone at the beginning of the year and they did one then that helped so much it was like night and day).  But recently I have been having trouble sitting down and my hips have been giving me a lot of trouble.  By doing the caudal block again, we will be able to see how much of the pain is from my tailbone and how much is from my hips.  That way if I still have trouble, they can send me to a rheumatologist to find out what is going on with my hips.

See, this is exactly what I was talking about in my post Be Your Own Advocate.  You have to stand up for yourself and demand that you get the service you deserve.  My clinic was fast to make amends and correct the problems.  Why?  Because they know that I can go somewhere else.  If I go somewhere else, my money goes with me…and they want to keep that money there.  Also, there is the small matter of the medical board.  If you are treated disrespectfully, and the doctor is unwilling to make amends, you should report him (or the clinic, whichever the case may be) to the medical board in your state.  If we don’t speak up about mistreatment, then no one knows that it’s happening.  You have to be strong and speak up for yourself.  Everyone (but especially a person with a chronic illness) deserves to be respected and treated to the best of the doctor’s ability.  If the doctor is unable to treat the patient, then they should be referred elsewhere, but the patient should NEVER be disrespected.  NEVER EVER!  Be strong my friends.  I know that when you are dealing with a chronic issue, you lose faith in the medical profession and sometimes even in yourself…but don’t.  Because YOU ARE WORTH IT!  You deserve to be treated with the utmost respect and you should demand it.  BE STRONG!

 

 

Related articles

• Advanced Practice Nurses Fill the Void (health-host.co.uk)
• The most important part of the patient history …. (drsam1980.wordpress.com)
• Nurse practitioners, physician assistants will have increased role under new law (yumasun.com)

 

Bailey’s Surgery

Mama’s girl

I haven’t written a post in quite a while.  That leaves a lot of “living, loving, hope,” and writing to be done.  Why the reference to breast cancer month?  Because I love October and Breast Cancer Awareness.  Since pink just happens to be my favorite color, October and I usually get along pretty well.  Also, the weather starts to change and I LOVE fall/autumn.  I am going to write this post in two parts because it ended up being REALLY long when I put it together.  So, here is Thursday part one.

I do have one thorn in my heart right now that I will tell you about.  My dog Bailey started having trouble on Saturday night using the bathroom until by Sunday, she was unable to urinate at all.  I called the vet on Sunday, but I took her first thing Monday morning.  After some x-rays were done, they said that she did not have any bladder stones (I guess like kidney stones in humans) but that the size of her bladder was stretched to double regular size. The doctor did this procedure where he drained everything out of her bladder and then kind of ‘rinsed it out’.  He said that she had so many crystals in her bladder/urine that he couldn’t believe that none had completely formed yet.  He also said that with 35 years experience as a vet he had never seen a dog’s bladder stretched as bad as hers was and with so many crystals.  So, like Mother, like Daughter.  Doctors have never seen adhesions as bad as I have and now, doctors have never seen a bladder like Bailey’s.  Poor Bailey.  I know she must have been in so much pain.  Whenever my bladder fills up, the room it takes up and the adhesions that it pulls as it expands is usually what wakes me up every night.  I can only as bad as it hurts, though, I can only imagine how bad my baby was hurting.  I called this morning to see if she could go home, and they told me that yes, she could go home because she had been able to urinate on her own, but that the doc would want to talk to me.  So, I went to physical therapy and when I got out I went to pick up my baby girl!  They put me in a room, though because

Bailey last year for Halloween as a Lion

the doctor wanted to talk to me.  When he came in he said that although he had seen her use the bathroom that morning, he had decided to do an x-ray to check just in case.  It turns out that she was not emptying her bladder…there was still a blockage.  So, his recommendation was to go ahead and do surgery.  He would go in and clean out her bladder and then she would be catheterized for a few days to allow the muscles around the bladder to rest and to hopefully shrink the bladder back down to size.  So, I agreed (this veterinary office has been the best I’ve ever used and they offer to let you make payments, therefore making the animal more important than the cash) and Bailey had surgery yesterday afternoon.  When I called later, they said that she got through the surgery just fine, but that it will be Monday before I can bring her home.  It breaks my heart that she’s not here, but I’m glad that she is being taken care of.

Be Your Own Advocate

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

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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?

 

Invisible Illness Awareness Week: 30 Things You May Not Know About My Invisible Illness

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1. The illness I live with is chronic pain caused by severe pelvic and abdominal adhesions. I also have migraines and pre-diabetes.

2. I was diagnosed with it in the year 2007 during surgery to remove a cyst, but wasn’t told that the adhesions were the cause of my pain until 2010.

3. But I had symptoms since 2005 after a long hospital stay.

4. The biggest adjustment I’ve had to make is that I have had to quit work and school. I have emotionally had to try to accept that this is forever, even knowing that there are a few specialists that claim to be able to remove the adhesions. My life now consists of staying at home and in bed most of the time. When I leave it is either to go to a doctor’s appointment, physical therapy, or grocery shopping.

5. Most people assume that I am ok because I look ok from the outside. All of the real damage is on the inside…physically and mentally. Sometimes I am asked about my tracheotomy scar that I got during my extended stay in the hospital in 2005 while on life support.

6. The hardest part about mornings is convincing my body to get out of bed and my muscles to relax. Somehow when I sleep I tense up and I end up getting out of bed and walking around like an old arthritic woman for about 5 or 10 minutes.

7. My favorite medical TV show is definitely House. I absolutely loved that show. House was such a jack ass that you couldn’t help but laugh. Also, I loved the way he always figured out what the problem was. I wish it was that way in real life. People go way to long without being diagnosed and some never are. I think that a diagnosis really means a lot especially to the person without one.

8. A gadget I couldn’t live without is my smartphone. It keeps me connected when I want to be but can also easily be ignored when I want.

9. The hardest part about nights are falling asleep and staying asleep. I take my medicine and it makes me sleepy so I go to sleep and then wake up at 2:00 or 3:00am and have a hard time going back to sleep. Or, I fight the medication to stay awake, usually end up loosing the battle and still wake up at 2:00 or 3:00. Then I have to try to go back to sleep again. Or, I win the battle with the medication and am able to stay up later, but then somehow later turns into really late and it is 2:00 or 3:00 before I can fall asleep. What is up with 2:00 and 3:00?

10. Each day I take 16-20 pills & vitamins.

11. Regarding alternative treatments I am currently reading a book on how to meditate and another one on beginners yoga. At this point, you get to where you will try anything just to have a small piece of your old life back.

12. If I had to choose between an invisible illness or visible I would choose: I really hate to say this, but I would choose a visible one. It is so much work trying to explain my pain. Having to explain that because of that pain I am always fatigued. When I do go somewhere I put on my brave face so that no one knows that anything is wrong and as soon as I am alone I break down. It really is a vicious cycle how you have no energy to do anything so then you get stressed about feeling useless or lord forbid you have relationship issues. That stress just makes your pain and fatigue even worse. And forget having no energy but doing it anyway. Forcing your body to do more than it can is a BIG mistake because YOUR BODY WILL MAKE YOU PAY.

13. Regarding working and career: I miss working a lot. I used to be a nail technician so I worked with the public. I was constantly meeting new people and making friends with the ones who returned. Then I decided I had done that long enough and went back to school for a BA in Foreign Languages. My specialty was linguistics and I wanted to be a translator, an interpreter, or an editor for translated books. The pain got so bad that I could barely sit through class, but I did until I had to start taking medication for the pain. That made me so “foggy” that I couldn’t properly do the work. That was when I had to quit school.

14. People would be surprised to know Just how much my dogs have meant to me. Something as simple as a pet can teach you what unconditional love is. My dogs don’t care if I’m hurting or if I’m not. If I’m in a pissy mood or happy. They love me for me. And when I get upset and cry, the one dog comes and tries to lick the tears off my face.

15. The hardest thing to accept about my new reality has been that there is no easy fix. I either have to put years of work into learning how to deal with the pain naturally or I have to find a doctor who will operate to remove the adhesions. That will be hard enough, but then to live through another surgery, especially one so complicated that every doctor I know has turned me away…it almost seems like a fairy tale. I’m not sure it can be done and a lifetime of narcotics and not being completely “here” is not an option.

16. Something I never thought I could do with my illness that I did was go on a 12 hour road trip that turned into 16 hours because we decided to take the dogs. Then spend a week with in-laws trying to pretend that I was ok when I felt like I was dying inside. Then the trip back home. It took me 2-3 days in bed (where the only thing I got up for was to go to the bathroom) in order to recuperate, but I did it! However, I don’t plan to do it again any time soon!

17. The commercials about my illness do not exist yet. Adhesions happens to around 90% of people who have surgery, yet they remain a “secret” that doctors don’t want to talk about. And that’s just surgery. Then you have to add all of the people who have had some kind of infection or damage to the area. Those are usually the ones that go for YEARS suffering without never knowing what is wrong because the only way to diagnose adhesions is with surgery…which will cause more adhesions. Here we go with the wicked cycles again.

18. Something I really miss doing since I was diagnosed is going out dancing. Having a couple of drinks and then dancing the night away. Hahaha…I wouldn’t even be able to sit on a barstool anymore. How sad is that?

19. It was really hard to have to give up my studies. I had promised myself and someone special that when I went back to school I would finish it. Even if I never ended up working in that profession, just to be able to say that I had done it and have the diploma on the wall. Also, it was very hard to give up the thought of having children one day. I so badly wanted to have children, but my body would be unable to do it.

20. A new hobby I have taken up since my diagnosis is BLOGGING. I just recently started, but it has been such a blessing to me to be able to meet other people who are dealing with the same things that I am dealing with. To be able to read their stories and it sound like I’m reading my own. It has become really special to me to be able to connect with real people again after being stuck in the house for so long.

21. If I could have one day of feeling normal again I honestly have no idea what I would do. There are so many things that I WANT to do, places that I WANT to go, that it would be really hard to decide what could be fit into one day. The one thing I would do is pray to whoever will listen to please give me one more day.

22. My illness has taught me not to take things for granted. It is amazing the things that “healthy” people take for granted with their bodies. Digestion for one. Whenever I eat I can almost feel it move completely through my system because of the pulls and tugs and aches along the way.

23. Want to know a secret? One thing people say that gets under my skin is: “Well you know what – I’m tired too. I worked a whole day and I’m tired. So that is no excuse for _____ not being done. I mean, you just lay around here all day. You have plenty of time to do things.” AARRGGHHH! Of course I have plenty of time. I have a whole lifetime to do things, but only if my body decides that it will let me. Or, sometimes I do feel able to do something around the house for example, but I know that I have a doctors appointment or sometimes even two doctors appointments the next day and I am going to need that energy. And the tiredness YOU feel after working all day is nothing compared to the tiredness I feel after dealing with severe pain all day, trips back and forth to the bathroom, washing and folding a couple of loads of clothes, hand washing dishes, cleaning up dog vomit, changing the bedsheets and then taking pain medicine to try to get all of those things done and then it wipes out whatever energy I might have left. Deal with that for a day and then compare your tired to my tired.

24. But I love it when people TRY to understand. They ask me questions because they don’t want to just say “oh, yeah” when they have no idea what disease or disorder I’m talking about. Honestly, they will never fully understand because unless you’ve felt it, there’s no imagining it. But at least when someone truly tries to understand what I deal with I feel validated.

25. My favorite motto, scripture, quote that gets me through tough times is: “God give me the serenity to accept the things I can not change, courage to change the things I can, and the wisdom to know the difference.” It was my mother’s favorite verse. I also love the poem Footsteps. My father enjoyed it. My favorite part is the very end where it says “The Lord replied ‘My precious, precious child, I love you and would never leave you. During your times of trial and suffering, when you see only one set of footprints in the sand, it was then that I carried you.'”

26. When someone is diagnosed I’d like to tell them that as much as it seems like it, they are not alone. There are others out there who understand what they are going through. For years, since adhesions isn’t listed as a disease or a disorder, I thought that it was just me. It was the circumstances that I had been through -no- put myself through that had resulted in me having these weird things inside of me gluing everything together. It wasn’t until I moved to the city that I live in now for school and was trying to find a doctor. Of all places, I found my doctor on a website created by a lady in Australia that was suffering from adhesions. It had profile pages and forums of many, many women who also suffered from the same thing as me. I was shocked. I was even more shocked to see a profile of a lady who lived close to me who recommended this OB/GYN who specializes in pelvic pain. He has been my doctor for three years now. He told me on my first visit that we were going to have a tough ride trying to manage my symptoms, but that however long it took, he would be there with me. And he has been. I thank the Lord every day that I was lucky enough to find a doctor who not only understood what I was going through, but knew I was in pain…admitted that he knew I hurt. I would make sure to tell the person recently diagnosed with ANY type of pelvic pain issue my recommendation for a GREAT doctor.

27. Something that has surprised me about living with an illness is just basically how unrelenting it can be. I can’t believe that it will always be there and it has surprised me how it has affected me emotionally. At times I realize that I am a lot stronger than I thought I was, and other times I just cry and cry like a baby. It has really been a roller coaster ride and I expect that it will continue to be for a while still. There is so much I have to learn about myself and my pain before I will be able to manage it my way.

28. The nicest thing someone did for me when I wasn’t feeling well was cook me a steak. A beautifully seasoned and grilled steak. Even with all my recent dietary restrictions (some things hurt to digest) I was able to eat that steak and not hurt. After a month of turkey sandwiches and sweet bread called Conchas, that steak was a real treat.

UPDATE: After seeing that I felt bad as soon as I woke up but still having to go to the doctor and do a whole day’s worth of running around, M- surprised me with an iPad that afternoon. Do you know how long I have been wanting one of those?

29. I’m involved with Invisible Illness Week because I have an invisible illness and I want to raise awareness. I not only want to raise awareness for my illness, but for all of the people who suffer other invisible illnesses and are not taken seriously because they “don’t look sick.”

30. The fact that you read this list makes me feel: proud to have completed it (and worth the pain of sitting up this long to type everything out). If only one person were to read it, then that would be one person who has a better understanding of what my life is like, and the lives of countless others dealing with the same issues. Oh, and after all this work, it would be nice if you left a comment! 🙂

Here We Go Again

Well, it’s been over a week now since my surgery.  Most of the “surgery pains” are gone or decreased and I am back to my old familiar pains.  At this moment I am right back on the emotional/physical pain roller coaster.  You all remember me saying how great M- was before surgery and even afterwards for that matter.  I thought he had finally understood, especially seeing the pictures and hearing the explanation from the doctor. But, at a little over a week later, all has gone to hell.

At first I handled the news that “nothing could be done” like a true champ.  Part of me knew it anyway, but hearing it confirmed is different.  Instead of getting upset, I went on some “I can do this” crusade.  I bought books on meditation, on yoga, and a book that was supposed to help me handle “my thoughts”.  It called Loving What Is by an author named Byron Katie who is known for “The Work” or “inquiry”.  Basically what “The Work” does is take the thoughts that cause you stress and make you see them differently to a point where they no longer cause you stress.  She has been interviewed by Oprah Winfrey and has at least 4 books under her belt not to mention numerous conferences all over the country where she teaches people how to do “The Work” for themselves.  The idea is pretty simple to have been so successful.  You take the negative (or bothersome) thought, ask yourself four questions and then do a turnaround of the original thought.  It  supposedly has helped thousands of people suffering from depression and other such ailments.  So I read the book up to the part where you are supposed to fill out your first sheet of thoughts.  I read one meditation book completely and read one yoga book to the point where it began to explain the exercises.  I still can not get my mind to shut up long enough to meditate, I don’t feel well enough to do any yoga stretches, and I fill out my first worksheet.  Then I freeze.  Why did I freeze?  Because it all of a sudden hits me that I am going to be in incurable pain for the rest of my life.  That’s why.  I freeze because 4 days ago M-‘s brother comes to stay with us to help M- at work and along with the brother came the old attitude.  Long gone are the days of him worrying whether I am able to eat or not much less cooking for me.  Now, I am supposed to do my “job” and have lunch cooked for them when they come home midday.  I am supposed to have the floors swept daily because we don’t have an extra bed and brother is sleeping on a palate of blankets on the floor.  Wash dishes because there are now 3 of us, and oh, not to mention folding about 6 loads of clothes that M- washed and never folded.  So, I do these things and day before yesterday just passed out.  I was so exhausted I didn’t even take my midday pain medication- I just passed out.  Well, when they got home to eat lunch I tried to get up to sit with them, but every muscle in my body told me no, so I just went back to sleep.  Later that evening, I get a lecture on how I looked like some crazy lady all high and passed out half sitting up in bed with my glasses crooked on my face.  I’m like WHAT?  I did what you asked me to, something that I’m not sure if I’m supposed to be doing yet because I haven’t gone back for my post-op appointment, and I get a lecture about being high and how embarrassed he was that his brother saw me like that.  I mean what the hell?  The argument continued outside and he started to halfway tell his brother what the problem was.  So I’m like nope, you opened Pandora’s box now I’ll just tell him the truth.  So I told him what M- was mad about.  He said that yes, he saw me lying quite uncomfortably on the bed but that he knows that I’m sick and what’s the big deal.  EXACTLY!  I told M- that if he had a problem with the way that I lie down that was his problem, not mine.  I have no control over the position that my body moves it’s way into while I’m asleep.  And as far as his “high” statement was concerned, I hadn’t even taken the medication in question.  Of course, seeing that his brother was on my side (and considering the fact that they were both already drunk – they came home that way) he kept apologizing and trying to kiss me and telling his brother that he had the best girl in the world.  Bullshit.  Fast forward to last night.  Again, they come home with a 24 count of beer and choose to spend the evening outside grilling.  I went outside (because that is the only way that I could talk to him.)  I wanted to show him a couple of things and talk to him for a minute.  It would have taken 5 minutes.  But oh no, he was WAY too tired to talk to me.  He just wanted to relax for a while and we would talk in the morning.  Well, the pair of idiots decided to stay up until 5:00 this morning.  He obviously wasn’t too tired to talk to his brother now was he? Once, at 3:00 am (I was already asleep) he brings the dogs in.  The dogs didn’t want to be inside with me, they wanted to be outside where the food was.  So they cried and whined and licked my face until I woke up (and was not too happy to have been woken up).  I took the dogs back outside to him, told him what time it was and went back to sleep.  So, then I get woken up again at 5:00 am when the pair of idiots come stumbling in the house because he wanted me to set the alarm clock to 7:30 am so that he could be at work at 8:00am.  I somehow fell back asleep until 6:00.  I went ahead and got up, fixed a cup of tea and something for them to eat for breakfast because I knew he wouldn’t have time to fix it himself.  I woke him up at 7:30  and again at 7:35 when I realized he had gone back to sleep.  That time he told me he just needed 10 more minutes.  So I woke him at 7:45 just to be reprimanded for not getting him up at 7:30 like he had asked.  I told him there was food made (which of course he didn’t want).  He left to go pick up some tools and said he would be back in an hour for his brother.  By some miracle I fell back asleep just to be woken up by him AGAIN wanting me to look at how cute the dog was while he played with him.  I snapped.  I was like you woke me up AGAIN just to look at the dog.  I realized that I did snap at him, but I didn’t mean too.  It had just been too much.  Not to mention that if I got 1/4 of the attention that my dog Jefferson gets from him I might be a happier person.  So I tried to apologize to him for snapping and he pulls this whole pity party now-you’ve-ruined-my-morning shit.  He thinks that he can say whatever he wants and get away with it, but I have to be some perfect “housewife” on top of my chronic pain and illness especially while his brother’s here.  Oh, and his brother’s girlfriend is coming next week.  I can’t do it!  So of course, now that he upset me (and doesn’t give a damn that he did so) now I have all these messed up thoughts about the way the rest of my life is going to go.  As much as I try to think positively, I just keep getting knocked back down.  My greatest fear is that one day I won’t have the strength to find that positivity in me anymore.  It will be gone. The sad part is that my patience has always been my best quality. And I am running out of it FAST! I am so sorry to all you readers that I promised more positive posts to.  I just don’t have much positivity left in me right now.  And I wouldn’t have written this one if I didn’t think that somehow this blog is therapeutic.  I just feel so vulnerable and helpless right now.

Grateful For the Small Things

Image from: http://www.unyimeivymusings.com/2013/08/sweat-small-stuff.html?m=1

I have learned, during a very short period of time, to be grateful for the small things. My surgery went well (meaning I didn’t die) lol. No, really, The doctor was unable to remove any of the adhesions (bad thing) but he took lots of pictures and a video of what it looks like in there (good thing). By not removing any adhesions my pain level will not change (bad thing) however, by not removing any adhesions, or even by not making a second cut, the risk for further complications was avoided (good thing). I think you get the point. the doctor was unable to remove any adhesions because it was simply just too bad in there. Everywhere (except the one place he cut-tell me our prayer didn’t work)had bowel glued to the abdominal wall by adhesions. The majority of the adhesions weren’t “bands of tissue” like the internet explains. Don’t get me wrong , I had some of those and they were pretty ugly ones, but the majority of them were like “sheets”. It was like my insides are draped in white sheets made of adhesions that keep them from moving…No, that imagery is all wrong. Have any of you seen the move “Arachnaphobia” (yes I know it’s old). If you haven’t, think of some movie you’ve seen where there are super-powered spiders trying to take over the house (or town, or whatever). So you remember in that movie how the webs were woven so thickly and so strong (and so big) that a person could run right towards it thinking they can break through but they end up bouncing back and landing on their butt. Then there are the scenes where people are wrapped up in these webs. You can still barely see them behind the white of the web and the only thing they can move is their eyes because they are wound up so tight? Yeah, that’s what my insides are like. And for those of you who don’t do spider movies (Come on, “Arachnaphobia” is STILL one of those movies I could watch anytime- I’ve probably seen it 15 or 20 times over my lifetime) then we could use the more medical imagery of everything being covered by sheets of ice, hence the term “frozen abdomen”.

So, now that we know that I have a “frozen abdomen” what does that mean? Well, for the most part no surgeon in his right mind is going to touch me unless it’s for some life-saving procedure like a bowel obstruction. Oh yeah, I forgot to tell you guys that the surgeon who bowed out of repairing my hernia “because it was more dangerous to me to have it repaired now than to repair it if/when it becomes blocked later on down the road” actually spoke to my doctor (the one who did the surgery) and told him he was damn crazy for trying in the first place. That the only way he would touch me is if it is a life or death situation. Nice. I have now officially been blackballed by the surgical community at large. Does that upset me? A little. What I do know is that if the day ever comes when my bowels or especially that hernia get obstructed and Dr. L comes waltzing in the room saying that he is going to save my life I am going to look him straight in the face and tell him that it’s too damn late. He could have fixed it before it became a problem but no, now I would rather wait for however long in excruciating pain for another surgeon to fix it. A surgeon who cares about his patients and doesn’t blow them off like countless other doctors have done. Let’s see how the super-doctor swallows that pill, huh?

Ok, I feel some anger issues here, so let’s talk about my other options for what the heck I’m supposed to do now. I can go on an internet search for what I call the übersurgeons (the ones who specialize in adhesion removal) send them all copies of my medical records and wait for one of them to bite. Assuming one does, then I would find out what insurances they take, move to their state of operation and acquire said supplementary insurance so that the surgery is paid for. Or, I could drop the supplementary insurance I have now, allow Medicare to pay, and then be responsible for the other 20%, which I am assuming on a surgery that massive would be at least $20,000 which I, my dear friends, do not have (so I guess that option’s out). Or, I could learn to live with the pain and take each day as it comes. Whoa- did I just say that? Yes, I told you at the beginning that I have learned to be grateful for the small stuff. Why would I want to move away from what little family I have and all that I have ever known to have a surgery that everyone is telling me could very well kill me. I have a life here (uncomfortable and lonely as it can sometimes be) but it’s mine. I would rather look for other ways to deal with all of this stuff before putting myself on the butcher block again. There are tons of things I haven’t tried; and until I try all of them I don’t intend to make any drastic moves. There is meditation and yoga. I know that my mind is never quiet even for a nano second but that can change. I have already acquired a book or two on the subject and intend to teach myself the art of meditation to temporarily relieve myself of the pain and to relax enough that it might not hurt as bad anyway. I intend to teach myself yoga, which is basically stretches, the same thing my physical therapist always wanted me to do anyway. There is occupational therapy that can teach me, well, I guess how to clean my house more efficiently so that I don’t make myself hurt anymore than I already do, which is why quite honestly I tend to clean house as little as possible. For you see, if I clean, then I hurt. If I hurt, I don’t clean. If it’s not clean, I’m not happy, M’s not happy and usually starts to bitch about me being here all day and the house is still a mess which stresses me out, which makes me hurt more…starting to see the cycle here? Also, there is something called biofeedback which I don’t really understand completely yet, but from what I do understand is that when you hurt in one area, you unconsciously over-correct somewhere else and then you hurt there. They teach you how not to do that. Lastly is hypnotherapy. Part of me is still a skeptic about this one, but hey, there’s no reason I couldn’t try. Hahaha I guess that gives whole new meaning to my sister-in-law telling me that when I hurt to just tell myself that I don’t. Someone else will be telling me that I don’t hurt and it will be up to my subconscious whether to believe it or not. Sorry, it just struck me as funny. Basically what I want to do with all of this is to get to a point where I can quit taking the pain medicine. Why you ask? I’m sick. I can’t change that. I have no control over when my body gives me a good day or a bad day (except for when I do too much and then I am just asking for a bad day). So, if I have no control over my body I want to have control over my mind. The whole reason I had to quit school in the first place was because the pain medication left me so “foggy-headed”. If I can get the fog to go away there’s no telling what I could accomplish. But as I am now, sometimes even the simplest statements I have to ask to be repeated if I am not paying complete attention. I hate how the medication makes me feel even as it’s taking the edge off of the pain. This is really the deciding factor for me here, guys. If I can survive without medication then I will survive. If not, I will have to go under the knife one more time. I just pray that God helps me to find the right surgeon for the enormous task at hand at the right price (free). That’s a pretty tall order, but something has to give. I want my life back. At 32 I am way too young to lay wasting away in bed all day every day. I get excited when I am able to wash a couple loads of clothes and wash dishes. Sometimes I can sweep the floors, but what about mopping them? What about washing the windows and dusting and cleaning the bathroom and just being able to move around enough to de-clutter? These are things that get overlooked because by the time I was dishes and wash clothes, maybe sweep the floor I am completely and utterly exhausted and the rest gets put on hold for the day I can do it. I’m tired of waiting. I am ready to cook again. Forget sandwiches. I want to be able to cook a meal, one made completely from scratch the way it’s supposed to be done. I love to cook. The times I am able to cook I’m either hurting too bad to eat or am in tears afterwards. I just have to get my body to agree to let me do it. I’m tired of my body being in charge. I’m ready to take control back and if it takes someone or a team of people to teach me how to do that, well I guess I better start looking for them. I at least had better start reading my books!