Tag Archives: doctor

I Don’t Believe in That Disease

 

 

 

 

 

 

 

 

 

I used to think having to be retested for a disease whenever a new physician didn’t believe that I had it was frustrating.  I can’t tell you how many times I was told by a new doctor that they didn’t believe my diagnosis of psoriatic arthritis from another physician.  Each time they wasted my money and time by reordering all the same tests, that wow, surprise, had the same results.  Thankfully, they would accept their own results and move on.

My diagnosis of fibromyalgia has been more problematic. In fact it almost cost me my life……..

Soon after receiving my diagnosis of fibromyalgia, I began having abdominal pain. I began seeing my gynecologist way more than I ever did while pregnant with my daughter.  During one visit I mentioned my diagnosis of fibromyalgia and he said, and I quote “That’s not a real disease.”

Believe it or not, his thinking that fibromyalgia wasn’t a real illness actually helped me for the first two years.  Because he didn’t believe in it, he pushed my insurance provider to approve an exploratory surgery when all tests came back showing nothing wrong.  That surgery revealed that I had endometriosis and an extremely large ovarian cyst.  The cyst and adhesions had pulled my bladder, uterus, and left ovary towards my sidewall.  In addition, they not only pulled my left fallopian tube towards the sidewall, it had adhered and embedded itself into it!

The pain and symptoms returned within a year. Thankfully he still didn’t believe in my chronic illness and agreed to perform a hysterectomy.  That surgery revealed a belly full of adhesions and a bunch of ovarian cysts.  In addition to what was found in the prior surgery, adhesions were also pulling my rectum towards my sidewall.  So far so good, right?! In fact you may be wondering how this led to me almost losing my life. Less than six months later, the pain on my left side returned and……..

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I was horrified when the pain returned.  My OBGYN had removed my uterus, ovaries, and fallopian tubes.  I had also had an appendectomy prior to the hysterectomy.  There wasn’t anything left that could be causing the pain that I was experiencing.  I returned to my gynecologist who after hearing about my pain, decided to blame my pain on fibromyalgia! The very disease he adamantly denied existence of became an easy way for him to get rid of a complicated patient.

Over the course of two years I went from one surgeon to another.  Not one would consider that I could still be experiencing problems from endometriosis or that it was possible that something went wrong with my hysterectomy.  One after the other opened my chart, without running any tests or performing any type of examination, and blamed fibromyalgia.

You may be thinking, wait a minute, those doctors believed that you had fibromyalgia!  I will never know whether they really believed that I had it or not, but I do know that they knew very little, if anything, about the disease.  When I would explain that his had never been one of my fibromyalgia symptoms, they would just say that they heard it was a symptom of it.  If they didn’t blame fibromyalgia, they told me that it was all in my head and that they would happily refer me to a psychiatrist.  Then they would close my file and leave the room…….

Two years, twenty surgeons, not one was willing to help me.  Each and everyone blamed an illness they knew little to nothing about and even denied until it became an easy scapegoat.  These men made me doubt my sanity, made everyone except for my husband and children think that I had lost my mind.  Friends and family believed that I was depressed, addicted to opioids (why else would someone go to the emergency room as much as I did), or that I wanted surgery for attention.  Funny thing about the last thing, is that all those who didn’t believe me, never helped out during the prior surgeries.  In the meantime my pain increased, I became weaker, and sicker.

Long story short, surgeon number twenty-one finally believed me and agreed to perform surgery.  What he found shocked me, the attending nurses, and the surgeon himself.  I had adhesions everywhere.  He had to scrape from my cervix up to my diaphragm. He also found that a large portion of my left fallopian tube had been left behind during the hysterectomy.  It was infected, covered in endometriosis, and was embedded into my sidewall.  Not only was it embedded into my sidewall, there was evidence of how it had adhered and embedded to other areas of the sidewall and was pulled out by adhesions.  If that wasn’t enough, my bowels were being strangled by adhesions.  But according to my original surgeon and 20 more, it was either fibromyalgia or in my head……..

 

 

 

 

 

 

 

 

 

 

 

 

 

 

My saga doesn’t end here. But the point of this post isn’t to share the entire story, but to demonstrate how if any of those surgeons had believed in or had any knowledge about fibromyalgia, I wouldn’t have had to suffer the way I did.  I have always despised my diagnosis of fibromyalgia and will continue to until doctors choose to learn more about it.  The ignorance of 22 surgeons almost cost me my life. As the surgeon who found the mess informed me, having my bowels strangled like they were would have killed me.

It doesn’t matter if a physician believes in fibromyalgia if they are not educated in it.

Have you ever been told that your disease isn’t real by a doctor?

Have serious unrelated symptoms/illnesses been overlooked because of your diagnosis of fibromyalgia or other disease?

The damage I suffered continues to haunt me and put my life at risk.  Don’t let the ignorance of one or twenty-one doctors put your life in danger. Had I given up, I wouldn’t be here to share my story with you today.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The search for a diagnosis continues

The search for a diagnosis continues

By Elysha

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So I’ve dealt with chronic illness for over 3 years now. So it’s safe for you to assume that I’ve seen A LOT of different doctors!! I’m still going to doctors to try to figure things out. I thought for awhile I can just deal with the pain and stop seeing doctors. I was so discouraged that we couldn’t find anything or we would try a new med and it didn’t help. It wasn’t just the pain bothering me though. Because of the pain along came other things, like depression, giving up, and self hate. I realized that I don’t want to live like this so I need to keep searching. Keep testing. Keep faith that I wasn’t going to be like this forever.

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After another ugly flare up that sent me to the hospital my mom talked to her friend that’s a GI doc. He agreed to see me. My mom also works with this guy so she knows he hates to be stumped and will do anything to try to figure things out. So I was excited to see what he had to say.

My biggest problem with seeing new doctors is not knowing where to start!! I start listing a few things, which leads to other things and then the “oh did I mention I lived in Haiti?”, then we look stuff up in Haiti, then they want to know what I did there and it just keeps going.

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It can be emotionally draining!! You talk about all these things that never worked, your body isn’t the same, your social life is different, you can’t do as much as you did before, you’re tired, and it goes on. I love talking about Haiti but sometimes it’s sad. It’s the main reason I’m sick. Sorry guys, this is me venting. I really love this new doctor and we’re doing some more testing, but it’s hard sometimes. So hopefully we can find something and try to improve things. If not, I will continue seeking answers and try not to get discouraged. Through this venting I hope you can be encouraged some how. Don’t forget… Keep the faith!

Click here to read more from Elysha

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Little by little Cynthia is getting her life back and she has Oska Pulse to thank for it. Find out how it has helped her with endometriosis, fibromyalgia, and psoriatic arthritis in her series at TheDisabledDiva.com. Ready to start your own journey? Click on the picture and use promo code DIVA to save $55

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Pain acclimation and relief relativity

Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net

Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net

 

You know the phrase “It’s all relative”?  Well, that is how I explain my ever changing tolerance to higher pain levels and how my definition of relief continues to change.

Acclimating to pain.  I have lived in many different climates.  With each move my body took time to adjust to the different types of weather.  For example, for the first few years after moving from Ohio to Arizona I went swimming on Christmas day.  For those first few years, Arizona winters felt like Ohio summers just without the humidity.  It was common for me to be seen wearing shorts and flip flops all winter long, that is until I acclimated.  After a few years, those warm winters began to feel cool, then a few years later I found myself feeling cold and actually dressing for winter weather.  The temperatures hadn’t changed, they were the same as when I moved there.  What changed was my definition of hot and cold.  For most of the time that I lived in Arizona, my body defined temperatures over 115 as too hot, 100-114 as hot, 85-100 as just right, under 85 as chilly, under 70 as freezing.  I never thought that I would feel warm again after moving to California with a climate that was cooler than Arizona yet not as humid as Ohio.  But within a few years, I found myself defining temperatures differently.  Now I consider any temp over 85 as too hot!  Again the only thing that has changed is how long I have lived in a particular climate.

When you look at the relativity of the climate, how I defined each one makes sense.  Think about it.  Because I was living with daytime highs between 90-120 and lows between 80-90 for six months of the year, feeling chilly when the high was 80 makes sense.  Now that I live with daytime highs between 65-85 for 90% of the year, it makes sense that I no longer tolerate highs above that range.  The same goes for my pain.  Going from no pain to the pain from one condition was devastating.  Now that I have lived over 10 years with multiple conditions, the pain I experience from just one or even two of my conditions is something I consider to be a very good day!

I feel it is safe to assume that if our bodies and minds are able to adjust to the physical climates we live in, they are also able to acclimate to the physical pain caused by our chronic conditions.  The pains that had me running to the ER early on in my life of pain, are now pains that I have learned to live with.  It is not to say that the pain I experienced early on was less severe than what I experience now, or is it?  Yes and No.  The pain is different as at that time I was only dealing with one condition instead of multiple pain inducing illnesses.  However, I would still rate that early pain as intense as my current pain because at the time that was the worst pain that my body had ever experienced.  As far as my body and mind were concerned, that pain was the most awful pain that one could experience.  My threshold rises as my daily pains continue to increase.

The problem with ever changing and escalating pain is that it never ends.  On a sub-conscience I feel like my body had to accept that experiencing some level of physical pain everyday was inevitable and learned to adapt.  On a conscience level, I knew that unless I wanted to spend every day of my life in the ER, I had to learn how to cope with various levels of pain.

What relief means to me:  My threshold of pain isn’t the only thing that has changed.  My definition of relief is no longer what it used to be.  Early on, relief meant having no pain.  Unfortunately this understanding only led to disappointment as I never experienced full relief from pain.  Fast forward 16 years and add a few more chronic conditions and the term relief has taken on a new meaning. When I say that I am experiencing or have experienced relief, it mostly means that my pain level has dropped one or a few notches.  This would have disappointed me early on, but now I find myself feeling giddy whenever I experience some sort of relief.  By accepting that I will always be in some kind of pain, I am able to enjoy and relish the moments whenever my pain level is reduced, even if just a tiny bit.

Why this is hard for people who don’t live with daily physical pain to understand this?  I know that prior to my life of living with constant pain, I had no concept of what it would be like to live knowing that a pain was here to stay.  I had had surgeries and injuries that were painful, but the difference was that I healed and the pain went away.  While the memory of feeling pain-free has escaped me, I do remember that healing feeling.  I can recall how during my recoveries  my body felt stronger and my pain level decreased as each day passed.  That feeling is similar to how I feel when I am experiencing a chronic flare.  The only difference is that I never fully heal.

My wish is for doctors and others to understand that when a person with chronic pain says that they are experiencing relief, they are still in pain.  The pain is less, but never gone. We are never truly pain free.  Sometimes one pain overrides another or causes another to spiral out of control.  Any reduction of the most severe pain can make other pains tolerable.  By tolerable, I don’t mean being able to live or keep  a pace like I did before becoming chronically ill.  Instead tolerable means not spending my day in tears.

So far 2016 has not been kind to me in regards to physical pain.  And while the pain I have been experiencing this year feels more intense than anything I have felt before, the past 16 years have given me reason to believe that as time goes by I will no longer think of it as the worst I’ve experienced.  As time goes by my body will continue to adjust, I will adapt, and my threshold will continue to rise.

Wishing you a day filled with gentle hugs and many reasons to smile,
The Disabled Diva

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Round One

Round One

Image courtesy of digitalart at FreeDigitalPhotos.net

Image courtesy of digitalart at FreeDigitalPhotos.net

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Like many past doctor appointments, I left this one in tears.  However, the tears were not the product of frustration or heartbreak, this time the tears I shed were happy tears.  As I explained in my previous post, Preparing for Battle, I had my first appointment to get the ball rolling on seeking relief from abdominal adhesions this week.  I struggled over whether or not to even make an appointment because I know that surgery is the only answer, an answer that does not thrill me.  You see I have had a total of 10 surgeries in my lifetime, 8 of those taking place in my abdomen.  My last surgery was 8 years ago and after I swore that I would never have surgery again unless absolutely necessary.  Because of this I have suffered with bouts of pain from my adhesions during the past 8 years, but never to the extent that I have experienced during the past 6 months.

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I entered the exam room filled with fear.  I feared that my doctor would not see that my digestive issues were just symptoms and would waste my time with tests that wouldn’t provide answers.  I feared that he would say, “You know that surgery isn’t the answer as your adhesions will just return”.  I feared that he would say “sucks to be you, there’s nothing I can do for you.”  I was justified to fear all of this as these words were what I heard often during the 2 year period after my hysterectomy.

During my exam, I forced myself to remain calm.  I spoke slowly and clearly.  I even practiced saying the correct words beforehand.  One mistake I always make when describing my abdominal pain is to call it stomach pain.  So I made sure to always refer to my abdominal pain as just that!  I also explained that what I am currently going through is identical to what I went through when adhesions were strangling my bowls.  Another thing I did was to express that I fully understand that the adhesions will return.  But I will gladly deal with bouts of pain that lasts for days, weeks, or even 3 months again if it meant that I had a chance to go another 8 years until reaching my current status.

At the end of the appointment, my doctor turned to me and said “I am referring you to a surgeon” He was in full agreement with what I believed may be going on inside of me.  While not pleasant, I was happy that I was extremely bloated on this day, so he could see just what I was talking about.  Until this appointment, I didn’t really have a clue as to how bloated I have been or that the bloating wasn’t confined to my belly.  About six months ago, the battery in my scale died and I have yet to replace it.  I feared stepping on the scale at my doctor’s office because I look like I’ve gained 20lbs.  On one hand I was relieved to hear that I have only gained 3lbs since I last saw him a year ago.  On the other hand, it disturbs me that I am swelling head to toe. My doctor knows how much I love Disneyland and that I normally go to the park 2-5 times a month.  When he heard that I have had to force myself to go once a month since December, he knew that I was hurting and that this pain was greatly slowing me down.  As I left the exam room my doctor told me that I would be receiving a call soon to schedule a CT and an appointment with a gastrointestinal surgeon.  With what I have been through in the past, I asked my husband to pinch me.  I couldn’t believe how well this appointment went.

For the first time in what feels like forever, I was able to smile and relax after my appointment.  This may have been a fluke or a sign that maybe my luck is changing.  Whatever it is, I will continue to expect the worst from each appointment.  I don’t do this because I am a negative person, it’s because I have found that it is best for me to expect and prepare for the worst.  When I expect the worst, any good news, no matter how small feels like a victory.  When I expect the best, all news seems to fall short.

I am hoping to see the surgeon soon.  In the meantime, my doctor needs to decide if he wants to cancel or alter the order for my CT.  Unfortunately, he ordered it with contrast and I am allergic to iodine.  Because I can’t have the contrast, all CTs and MRIs have been useless in diagnosing my issues.  Until then, I will just continue to get through each day the best that I can.  When pain induced tears fall from my eyes, I will just wipe them away and pray that tomorrow will be a better day.

How do you approach your appointments?  Do you expect the best or the worst?

Wishing you a day filled with gentle hugs and many reasons to smile,

The Disabled Diva

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Doctor Appointments That Do More Harm Than Good

 

 

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Whether someone suffers from chronic pain or not, I feel it is safe to assume that most people see their doctors for two reasons.  The first is to stay healthy and the second is to find answers and get well.  The last thing we expect is to leave that appointment physically feeling 10X worse than we did when we arrived.   I expect to physically feel worse is if I have the flu, bronchitis, etc….  I also expect to experience some additional physical pain from my chronic conditions.  But even then, the level of exhaustion is nothing compared to what I endure from regular checkups of my chronic conditions.

After 15 years of living with my chronic conditions, I have been able to pinpoint what makes these appointments so unbearable.  The cause is the time I spend waiting to see my doctor past my appointment time.  There is no excuse for making patients wait 45-60 minutes past their appointment time in the waiting room.  I understand that emergencies happen or that the doctor may have needed more time with another now and again.  However, for some doctors this seems to be common practice and the only excuse they have is over booking patients and not allowing for enough time for their visits.

I was fortunate that when I lived in Arizona, most of my doctors were excellent about getting patients into the exam room in a timely manner.  Even if a problem arose and I had to wait, being in the exam room allowed me to lie down and rest.  While tiring no matter how little or long I had to wait, it never took me weeks to recover from the additional fatigue or pain.

My first four years in California were another story.  Each physician kept me waiting in their waiting room for 30-60 minutes past my appointment time.  In most instances, they also kept me waiting for an additional 20-40 minutes after entering the exam room.

I wish my complaint about waiting to be seen was just about waiting.  But it is so much more than that.  I feel that by making us wait for so long to be seen, our physicians show a lack of understanding or compassion about our chronic conditions.  And here is why:

  1. We are already pushing our physical limits by bathing, getting dressed, and traveling to their offices. We push harder than we may normally push ourselves, as we acknowledge and respect that our doctor’s time is limited. If we, the patients, are willing to endure additional fatigue and physical pain to be on time, why can’t doctors have the same respect for our time? By the time I arrive for an appointment, I am worn out.
  2.  The longer I wait, the higher my pain level rises. I may enter my doctor’s office with an average (for me) pain level. Yet, after waiting for what feels like an eternity to be escorted into the exam room, my pain level spikes to a level that no one should ever have to experience. At this point, I am either fighting back tears, crying, and/or my pain level may cause my blood pressure to elevate. This creates a non-issue that later takes a chunk of the few minutes my doctor has for me during my exam. In my case, my blood pressure only escalates when I am in severe pain and I continue to push myself harder than I should. Some doctors recognize this and are able to move on from that topic, while others obsess on it and we never get around to discussing what I really needed to discuss.
  3. This higher pain level makes answering the nurse’s questions harder than it should be. Between Fibro fog and brain pain, it’s a miracle when I am able to state my name and birthdate. While experiencing higher pain levels, my brain and mouth don’t always work together. I may know what to say, but am unable to articulate it or I just draw a blank.
  4. If I am lucky, the time spent waiting in the exam room won’t be too long. No matter how long I have to wait at this point, the damage is done. It doesn’t matter how well I prepare for the appointment. My lists of concerns, questions, and new developments are useless when my doctor is rushing me through my appointment by rapidly firing questions at me and expecting immediate answers. When a doctor doesn’t keep me waiting past my appointment time in the waiting room, my lists are a great help. Not waiting that additional time makes it easier for me to keep track of what he is asking and what is left on the list that I must discuss before the appointment ends. When my physician is on time, I am able to remain calm, respond to his questions, understand what he is saying, and ask questions of my own.

During one appointment in which I wasn’t led into the exam room until an hour after my appointment time and then had to wait an additional 40 minutes for my doctor to come in, ended up in an argument.  While timely when I first began to see him, running behind quickly became his norm. This physician allotted 15 minutes for each of his patients and because of this I always arrived prepared with my lists.  Instead of starting the appointment by going over my lists, he began obsessing over past lab work that he said was fine during my last appointment.  I repeatedly tried to interrupt him and remind him that he had said there was nothing wrong with those tests.  Ten minutes into the appointment and I finally had enough.  I abruptly cut him off mid-sentence and said that unless those lab tests had anything to do with the reason I was there for; he needed to stop discussing them and listen to me.  He then had the audacity to remind me that we only had a few minutes left!!!!!  Needless to say, he wasn’t happy when I pointed out that he was the one wasting my time.  I left without answers and in more pain than I could have ever imagined.  I also left with a mission to find a new doctor.  It took weeks to physically recover from that appointment.  The emotional stress was just as detrimental to my health as the physical stress was.

One reason my pain escalates so intensely during the time I am kept waiting to see the doctor is that I prefer not to medicate for pain prior.  Both pharmaceutical pain medications and medical marijuana may cause me to get side tracked or forget to mention what I really wanted to discuss.  When I am seeing a doctor, I want to be aware of each pain and its intensity.  Another reason I don’t like treating my pain prior to an appointment is that it skews or clouds my examination.  When medicated I can stand or sit longer than when not.  This does not give my doctor a true picture of what is going on.  Medicating prior may also dull a new pain which may result in my forgetting to mention it.

Before I ramble on and on, let me get back to my point…. My point is this:  If doctors would stop over booking patients, we could be seen on time.  By being seen on time, patients like me are more likely to be cooperative, pleasant, and easy to work with.  Less things would be missed, less mistakes (like prescribing medications that your patient is allergic to) will be made, and the patient won’t need weeks to recover.  Thankfully I have since changed healthcare plans and my new physicians have yet to keep me waiting as long as all the others I had seen during my first four years in California.  And instead of waiting weeks to return to my new normal, I am usually only knocked down for a few days.  I expect and plan for this as I know how my body will react.  But no one should have to plan on being bed ridden for weeks just because of a routine doctor’s appointment.  Because of this, I submit my own bill to any physician that keeps me waiting more than 15 minutes in the waiting room past my appointment time and/or if the wait in the exam room is equally long, because my time is valuable.  They are not only robbing me of the time I had to wait, they are robbing me and my family of days and weeks that I may not have had to been stuck in bed.   Like I stated above, I understand that an emergency may arise, and in those cases I can excuse tardiness, but not when it becomes a regular occurrences.

I have one request of physicians who treat patients with chronic pain:  Please respect our time as we do yours by arriving on time.

A question for my chronically ill friends:  Have you noticed a difference in your demeanor, pain level, patience, or overall quality level of your visit by how little or long you were kept waiting?

Wishing you a day filled with gentle hugs and smiles!

The Disabled Diva

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Finding myself in his shoes

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It has been a crazy week for my family.  It all started on Friday evening when my husband hurt his back while loading my wheelchair into our SUV.  Thankfully I have been feeling relatively better than normal and was able to care for him over the weekend.  Thankfully his back was feeling better by Monday, because my body was wearing down and my pain was increasing.  Just as I began to think that life and our roles of caregiver and patient were returning to normal, I had the rug pulled out from under me.  Around 3AM Tuesday morning my husband woke me up to tell me that while getting ready for work he began coughing up blood.  I leapt from bed, brushed my hair, and threw on some clothing and without hesitation I took him to the ER.  Whatever pain I was in didn’t matter, my only concern was my husband’s health.  After only a few short hours of testing the hospital decided to admit him for observation and more testing. At this point my body was screaming for rest and my husband was fine with me going home to take a nap until he was settled in a room.  The reason we were both okay with this decision was that physically he felt fine.

After a short nap, I received a text that he was settled in his room.  The surprise however was the type of room that he was put into. He was put in an infectious disease containment room, because apparently coughing up blood is enough for them to suspect a patient has TB.  At first I worried that they weren’t going to allow us to visit him, but that turned out to not be an issue after all.  On day one my daughter and I had to wear masks and gowns to be permitted in his room.

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Today the hospital loosened the restrictions a bit and we only had to wear masks.  This made for a more pleasant visit, as the gowns made us sweat like piggies!!

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So far every test  is proving each of their theories wrong.  What he has is a cavity in one of his lungs that is bleeding.  Until this evening they believed that it was being caused by a bout of pneumonia, TB, or cancer.  None of these conditions fit with his symptoms and it has been driving me crazy.  Finally this evening a doctor suggested that he could possibly have Valley Fever or MRSA.  Now these theories make sense!!!  Unfortunately, because they reported my husband as a possible TB patient, he will have to stay isolated in the hospital until all the tests come back negative and the state is satisfied that he doesn’t have it.  The upside to this is that the hospital has plenty of time to run more tests and to find the real problem.

This week has opened my eyes to what life is like for my husband.  For years he has had to deal with never knowing if one or more of my symptoms were just part of my conditions or if they were something else.  For years he has had to deal with my doctors making multiple incorrect diagnosis’ before landing upon a correct one.  For years he has had to live and deal with the uncertainty of tomorrow.  While I have always been frustrated by these things myself, I never really thought about how hard it was for him as well.  Now that I am in his shoes, I want to scream.  I want them to figure out what is wrong with him! I want them to fix him!!! For the first time in forever our plans for the next few weeks don’t depend on how I am feeling, but rather they depend on what is wrong with him and how it will be treated.  I now know the frustration that he has had to deal with since I was first diagnosed with chronic pain.  But most of all I understand how maddening it is to know that there is something wrong with your spouse and to not have any answers!  Plans can be cancelled or rescheduled, but nothing or no one can replace my husband. My heart aches when I think of how long my husband has been in this situation with me, how long he has lived with hoping that my doctors would get the right diagnosis or that they would even be able to help me.  The hardest part for me is knowing that there is nothing I can do at the moment except to trust his physicians.  This is difficult for me when I consider how many times my doctors misdiagnosed me or made life altering errors during surgery.  I am terrified that his life is in their hands.  If it weren’t for my faith in God, I would be a basket case.  I am praying for answers, for my husband to be healed, and for my sanity to remain in tact!

My conditions have limited the amount of time that I have been able to spend in the hospital with him.  I wish I could be with him all night and day.  For now I just pray that the doctors will find the real culprit and that he is able to return home soon.  Not knowing what is going on is the worst.  I am not afraid of tackling problems I know about.  I will come up with several plans of attack and when one fails, I move on to the next.  Not knowing the problem makes it impossible to create attack plans and is testing my patience.

I hope to have an update soon, but in the meantime prayers are welcomed and appreciated!

The Disabled Diva

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More tests, less answers

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The quest to figure out what is causing the pain in my belly is taking much longer than I had expected.  Of course not being able to poop in a timely manner didn’t help either.  So far an ultrasound revealed a mass in my liver.  Then like magic, the mass was no where to be seen in my MRI.  My stool sample eliminated my doctor’s first suspicion of an infection.  I guess my doctor thought I should have been jumping for joy that these tests were all coming back negative, instead he appeared to be annoyed when I reminded him that  my symptoms were still present.  In a way I am over joyed, it is not that I want a mass in my liver, or want a tumor or infection, but I do want an explanation.  Something has to be causing my nausea, vomiting,  diarrhea, constipation, bloating, and the horrible pain that feels like I have a litter of alien babies trying to claw their way out of my belly.

The next step was to check for stomach ulcers by scoping my esophagus and stomach.  Guess what?!  No ulcers were found and everything looked fine. My doctor’s suggestion???  Change my diet and come back if nothing changes!!! First off following their dietary suggestion will be easy since I only eat a few of the things on their NoNo list.  But I know that won’t be the end all.  Why?  Because of I have gone long periods of time not eating or drinking those items and still had all my symptoms present!!!  For now I guess I have no choice but to follow this plan and wait a few weeks before pressing them to continue testing.

I am trying hard to not let this added pain and discomfort from disrupting my life, but it is not that easy.  As much as I try to live around my symptoms and make allowances for them, the pain they cause can be too much to handle…. Not to mention that this pain is in addition to my chronic pain caused by Psoriatic Arthritis, Degenerative Disc Disease, and Fibromyalgia. How much pain is too much??!!!???

One interesting thing happened after my scope yesterday…. I was reminded of why I chose to treat my pain with marijuana.  The IV cocktail that was given to me to make me sleepy and keep me comfortable contained Demerol.  Demerol was one of the drugs that doctors used to give me for pain back when I treated my conditions with pharmaceutical medications.  As expected I was groggy after the procedure and went straight to bed after my husband drove me home.  My procedure was at 9:00am, I awoke from my nap at 4:00pm with a raging headache.  I forgot how sluggish I used to feel when I took prescription pain pills.  I forgot how much my head used to hurt.  I am so happy and thankful that I no longer have to live like that.

So the wait continues…..and I will keep doing what I always do….adjust my tolerance level and find new ways to work around my pain…….

The Disabled Diva

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