Product Review: Axon Optics Glasses

With Axon Optics glasses

With Axon Optics glasses

It has been a while since I won a pair of sunglasses from Axon Optics and Michael Fernandez at MigraineDiscussions.com. This company makes glasses for migraine sufferers or for anyone with a sensitivity to light such as someone who is at a computer screen all day. I can’t really say anything about the indoor glasses since mine are for the outdoors. However I do have some things to say about the ones I own.

First of all, I was surprised that for a pair of “over Rx glasses”, these are remarkably stylish. I remember when I was a kid and they made the lenses that fit over the prescription eyeglasses and flipped up…not so cool. These, however, are just the right size to fit over my glasses and hide them from view. It looks like I simply have on a pair of sunglasses. So as far as style goes, it’s a thumbs up. 👍

The frames are lightweight. I mentioned in another post how a previous pair of sunglasses I had made the bridge of my nose hurt after about an hour. I can wear these glasses almost all day (or at least a few hours) before they start to bother me. However, when they do, a simple adjustment in the placement of my Rx glasses and I’m good for another little while. So, for comfort…another thumbs up. 👍

Now, as far as doing what they claim to do…helping with migraines: Since I received the glasses (it has been about 3 weeks) I have worn them every day when going outside. In that time I usually would have taken my migraine medication (Maxalt) to keep a migraine at bay at least 5 times, sometimes more. I have only taken one dose of Maxalt since receiving these glasses and it was taken at the first sign of a headache to prevent it from becoming a full-blown migraine. It is possible that it wouldn’t have developed into one, but like they say- better safe than sorry. By providing full coverage from the sun even on the sides (unlike most sunglasses that allow the light to come in from the sides and sometimes the top and bottom of the lenses) the use of these glasses have kept me from having to take as much medication as before. Therefore, I have to give it another thumbs up. 👍

Since I haven’t had a full-blown migraine, I have not been able to use these glasses yet during the light-sensitivity part of the headache. However, because of the coverage, I believe that it would be safe to assume that they would be very helpful when having to be in a well-lit room during a headache. I think that they would provide relief in that situation as well. In this area, I have to reserve the thumbs up for when this happens. I will keep you guys posted on that front.

I am so very grateful to Michael and Axon Optics for providing me with these great sunglasses. They have met all my needs so far and may help any of you who suffer from migraines or other types of light-sensitivity. If you would like more information you can go to the Axon Optics website here or contact Michael Fernandez at MigraineDiscussions@gmail.com.

Calling All Fibro-Bloggers!

I’m calling for some help from the wonderful Fibromites in my life (as well as some of the ones that I’ve yet to meet – Hello!). I have started a new page that I’ve been meaning to get out of my head for a while. It’s a page with all of the things that I’ve done to treat my fibromyalgia pain and how it went for me (or in this case – for us). Whether it was a…

Read more: Calling All Fibro-Bloggers!.

Chronic Pain and Suicide

Image credit: Pinterest

Image credit: Pinterest

With chronic pain comes a chronic condition: suicide. when you think about it, it makes sense. When someone hurts day and night for any significant amount of time, feelings of helplessness (especially in regards to the medical system, but also in inability to perform activities one used to do) and worthlessness (loss of income due to inability to work) can add to the burden of living with unrelenting pain.

According to rsds.com:

— Over 30% of the US population is affected by chronic pain

— Prolonged pain conditions are associated with significant interference in physical, social, vocational/educational, and sexual functioning

— Excluding arthritis, people with chronic pain are four times more likely to attempt suicide than other adults (National Pain Foundation)

And according to an article in the Orlando Sentinel:

— Large-scale studies show that at least 10 percent of suicides — and possibly as many as 70 percent — are linked to chronic illness or unrelenting pain.

With numbers like these, it’s easy to see just how big of a problem chronic pain can be in the lives of its sufferers.

I personally have considered suicide a time or two. I have been lucky in that I snap out of it quickly and get back into warrior mode. I however, am lucky in that I have doctors who understand my condition and are willing to prescribe medications that take the edge off of my pain, allowing me to think more clearly and deal with life as it comes. I also have a psychologist and a psychiatrist who understand my pain and work with me on stressors so that I can better deal with the things that life throws at me, including the pain itself.

Others aren’t so lucky. Without the appropriate pain medications and psychological/psychiatric help, the physical and emotional pain can become completely unbearable. Without belief and support from friends and family, the situation becomes worse for the sufferer. To be honest, the times that I have considered suicide, it was because of a lack of a support system.

I am writing this post in honor of a very good friend of mine who is dealing with this problem even as I type this post. I want her to remember that she has friends that care about her and who love her. We understand what she is going through. I pray that she is able to get some kind of relief soon not only from her pain, but from the other struggles that she is facing at this time. I ask that if you’re reading this to please say a prayer for my friend. If you don’t pray, then send as many good thoughts and feelings to her as you can.

Have you ever contemplated suicide because of your chronic pain?

Do you know someone who has been in this situation before? What helped them through it?

Do you believe and support your chronic pain friends or loved ones the way you should? If not, please understand that things like being called lazy or unproductive can reach the very soul of the patient and can cause these types of thoughts.

Are you, as a doctor, doing everything you can for your chronic pain patients, or do you get frustrated and try to pass them off to another specialist? Please understand that we, as patients, place our trust in you to believe us and to help us. We need you more than you can imagine. If you are stuck and don’t know where to go in their treatment, tell them so. Find someone who can help, but make sure that the patient knows that whatever happens with the referral, you are still there for them.

Life is hard for everyone. Try to imagine your everyday stressors and add to that the worst pain you can imagine. Now think how your life would be with that kind of pain 24/7, people who don’t believe that you are in pain, financial hardship because you are unable to work, and on top of all that is your everyday stressors. That is what we, as chronic pain patients deal with daily. Be kind. Understand. And most importantly, look out for warning signs of suicidal thoughts. These are your loved ones, your neighbors, your friends. Be there for them.

BOs

BO. No, I am not going to discuss body odor. However, what I am going to discuss may be just as disturbing, so let’s just say you’ve been warned.

BOs: in my world, the world of pelvic/abdominal adhesions, the one fear we live with on a daily basis is BOs or bowel obstructions.  The adhesions usually like to wrap their way around bowel, which is the point where doctors decide that surgery is too dangerous.  Once the bowel has been compromised, we are left to battle symptoms such as bloating, nausea, vomiting, and the ever present constipation on a daily basis. We live in fear of the day when the adhesions have a good grip on the bowels, causing a partial or full bowel obstruction.

From what I have learned from the adhesion groups on Facebook, the obstructions feel almost like childbirth. You have these strong, painful cramps and feel like you should be pushing. If it is a partial obstruction, then it usually passes and you are able to evacuate. However, if it doesn’t pass and you start to vomit, it is usually time to head to the ER and means surgery is eminent. These are the surgeries that our doctors dread the most. It is a life-saving surgery and there is always the chance that the person has waited too long and infection sets in or the person can end up coming out of the surgery with the dreaded colostomy bag.

Why am I telling you all this? Many people with severe adhesions eventually adopt a liquid diet to help to avoid BOs. I thank God every day that I am still able to eat. I worry about the day when I will have a partial or full BO. That is just part of life for people like me. One day, it will happen. I try to be prepared. I am on a variety of laxative-type medications every day to keep things moving and prevent a BO. My fridge is stocked with various protein shakes such as Ensure for when I must adopt the liquid diet (even if it is temporary).

I write about these unpleasant things so that you understand my worries, my pain, my life. So that if you ever meet a person with adhesions you understand them, their worries, their pain, and their life. So that you understand how the severe pain of daily living causes many to have to quit work. They are not lazy, they are in pain. Not just physical pain, but the emotional pain of being told by the doctors that there is nothing more that can be done. That no more surgeries can be done unless the “situation” becomes life threatening, and worrying daily if you will be able to get through the day with a lesser amount of pain than the day before and without having the dreaded BO.

Come on, baby, spend Christmas with me!

http://companyforchristmas.wordpress.com/

It’s C4C – Company for Christmas

Company for Christmas is a volunteer fueled mission, created by fabulous blogger RuleofStupid. It is a virtual place for people who, quite simply, don’t have any company on Christmas, and would benefit from a little non-religiously-affiliated,  non-counseling -orientated, conversation.

Read more of this post:  Come on, baby, spend Christmas with me!.

First day of Occupational Therapy

Today was my first day of occupational therapy.  It went better than I thought it would.  Since it was the first visit, we mainly sat and talked, well, I talked and she listened or asked questions.  Of course I had to go over my whole back story with her so that she would understand why a 32 yr old woman needed occupational therapy.  I’m sure it looked funny to her.  If not, it looked funny to me because everyone else in the waiting room was over 50.

I am being seen for ADL or Activities of Daily Living.  According to pbs.org, this includes activities such as:

–  Bathing

– Dressing

– Grooming

– Oral Care

– Toileting

– Transferring

– Walking

– Climbing Stairs

– Eating

– Shopping

– Cooking

– Managing Medications

– Using the Phone

– Housework

– Doing Laundry

– Driving

– Managing Finances

Granted, most of these things I can still do quite well.  What I do have problems with are cooking and housework.  It has been a long time since I have cooked a whole meal on my own, and even when I am able, I am hurting so bad by the time I finish that I can not eat.  Housework is a big problem for me.  So much needs to be done, I just can’t find the energy to do it, and when I do, I pay the consequences the next day.

So, after our talk and once she understood the things that I needed help doing, she got my pelvic pain specialist’s name and number to see if he has any restrictions on what I can or cannot do such as amount of weight I can lift, etc.  Then she explained that the best way to tackle something like that is to make a schedule.  First was to pick the time of day that I have the most energy.  Next, I’m supposed to prioritize.  Examples of that is bathing.  Since it is a priority, it needs to be the first thing scheduled and the rest follows after that.  Her goal for me is to do two personal care and two household items each day.  Of course, I won’t start out at two, just at one, but she needs to check with my doctor still to make sure he has no restrictions.  She gave me a paper on Energy Conservation and one on the Principles of Joint Protection.  There are a few things on that sheet that I don’t understand yet such as “Become an expert on body mechanics”.  That’s not something that people just know…they have to be taught.

Lastly, she gave me a catalog of personal care devices that might help.  For example, a shower chair would conserve energy (or “spoons”) by allowing me to shower while seated.  She said to go through the catalog and see if there were any products I thought might make my life easier and then to try to find them cheaper on the internet.  That was a given once I saw the prices in this thing.  They’re OUTRAGEOUS!  They want $200 for a shower chair when I didn’t buy one at the pharmacy because it cost $70.  I think if I look around I can probably find a cheaper one.

Needless to say, I am looking forward to the suggestions that they can offer to make my life easier and help me get to the point where I am able to be completely independent again.  I highly suggest this to any of you who are struggling with Activities of Daily Living.  I will keep you all posted as to how my later sessions go.  I was worried about going at first, but the lady made me feel completely comfortable and was eager to help.  It turned out to be a pretty good day after all.

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!

 

 

 

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