Where did I leave off? Oh yeah...
So are you interested in hearing all the possible diagnosis that has been laid out there and what they have actually determined? In the past month I have been given some disgusting, confusing and some downright frightening possibilities. Most of these have been ruled out: Let's get all of the C word ones out of there first - Colon Cancer, Pancreatic Cancer, Ovarian Cancer (surprise! I still have just one of my ovaries) Ovarian cysts, Polycycstic Kidney Disease, Ulcerative Collitis, Crohn's Disease, a parasitic infection (gross and thankfully I do not have that) Polyps, hital hernia, lymphadema, stomach ulcers, irritable bowel syndrome, hepatitis, pancreatitis flare up, fatty liver syndrome, acid reflux, blood clots, hemorrhoids, Barrett's esophagus.
I would honestly be so much happier if they would just say that they don't know because the test results aren't back or there is additional testing to be done. I don't like the waiting game, but the what ifs and researching are just making it worse. What has been established/confirmed: I have a hital hernia - uncomfortable and irritating, but not the biggest of my issues. There will be a surgery sometime for it, but it isn't a priority. I have precancerous cells in the polyps that were removed. Basically that means that I get colonoscopies more frequent and younger to keep an eye on it. I have internal hemorrhoids. My spleen is swollen (cause yet to be determined) My liver is swollen and enzymes are high, also cause yet to be determined. My platelets are low, cause yet to be determined. There is thinning in my colon. There is a mass the size of a tennis ball in my abdomen that is much larger than an ovary. Malnutrition and dehydration from being unable to retain food.
The amount of money we have had throw at this so far is crippling to our finances. Doctor visits, copays, prescriptions and time off of work are just a few of the major factors. *enormous sigh and lots of tears* We are robbing Peter to pay Paul at this point because we are trying to do it all on our own. Could we ask those around us for help and get it, yes, but that isn't who we really are.We have 6 people in our house to feed, clothe, pay utilities for and keep a roof over. (Don't even get me started on the money that is currently being taken from us under fraudulent pretense) Did I mention also putting gas in our vehicles to get to work? That is more than any family can handle. I won't even lie to you folks, there are times that no matter how sick I am and how awful I feel, I will not eat so that our children can. We are stuck in the same situation that so many others are in. We have jobs and insurance. We make enough to not get assistance, but not enough to be able to cover the costs of the medical issues. We are caught in a tough spot. Get medical treatment or provide for my family. The choice shouldn't have to be made by anyone. None of us should be forced to chose between being healthy and putting food on the table for our kids. None of us should feel like we have to sacrifice ourselves so that our family could survive.
Here is the real kicker - one of the office visits was enough to make me (possibly the world's most stubborn woman) want to throw in the towel. I left dejected, humiliated and angry. I won't get into the whole ordeal here, because even though I received awful service my goal is not to point fingers at others for wrong doing. That is something that I will address personally with the facility. Eventually, I got over all of the emotion of it and sucked it up. I didn't return to that office, I asked to be referred elsewhere. For a brief moment I felt bad for that. When I asked for a referral to a different office from my regular doctor so that I didn't have to see that specialist again I was asked why I needed the referral. At first I thought, "What does it matter? I asked not to be sent back to that office anymore because I wasn't happy with their service". I still think that. They pretty much got the same answer as my thoughts though minus the "Why does it matter". Shocker huh? I told they I as not just unhappy with the way the doctor in that office treated me, but the receptionist and the nurse as well. I did not want to see anyone in that office and I would like to be sent elsewhere. Then (I guess this is some protocol thing) I was asked if I was uncomfortable being seen by anyone other than my regular doctor. Nope, just get me in somewhere else with competent and reasonably professional staff.
Back to my question about why I felt bad and why I was questioned on wanting to change to a different specialist. The medical industry is a service based industry. Go ahead and try to get around calling it that, that is what it is plain and simple. Probably the most important service based industry outside of our government. We don't hesitate to take our money elsewhere and find someone else to provide a service when they don't perform in other arenas, so why is it so with the medical industry? If you send you car to the mechanic and they can't fix your car or figure it out, you take your vehicle elsewhere. If you get awful service in a restaurant you don't go back there. Not every doctor, nurse or medical facility is equally qualified. They aren't all on the same level of performance. Not everyone graduates at the top of their class, not everyone has the same demeanor, not everyone has the same aptitude. Yet we are led to believe that this the case. Why in the world would I pay my insurance company and the facility to be treated poorly and not have the problem that I was referred for attended to? Yeah...not about to pay to be treated like shit, not enough of a masochist for that.
The problem is this damn God Complex they all get. Guess what? If you work in the medical industry you aren't god and you aren't any better than anybody else. I have plenty of friends and even my adopted mom works in the medical industry. They aren't God either. And as consumers, we need to stop treating them like they are. That's right folks - we are all culpable for this. Sorry to burst your bubble, but every time we allow ourselves service than less than what is reasonable to expect and don't speak up - we all lose. I am not saying that medical professionals are not allowed mistakes, bad days and what have you - rather I am saying the antithesis. Treat them like they are a human, just like you. They have a tough job, no doubt about it. If they are a person that you don't care for the way they treat you or the service they give, go elsewhere. Chances are that it isn't going to be the right fit and you aren't going to get proper treatment if you are dreading going in there to begin with. If I am not comfortable with someone I certainly am not going to disclose everything and most likely will be so distracted that I forget to include vital information. That is unfair to them too. What doctor wants to deal with some rambling dipshit that isn't focused on why they are there? Be accountable for your care, don't hold them accountable. If you aren't happy - go somewhere else. Communicate without emotion when you can so that they can concentrate on your words, rather than your personality. Stop expecting them to be god for you, that is an unfair standard to hold them to. They can treat us, but they can never fix us.
So for today, have some patience for your patients. Patients, have some patience for your doctor.
Be well ~ Andrea
Friday, May 24, 2013
Thursday, May 23, 2013
Just Dropped in to See What Condition My Condition is In Pt 1
Pardon me, Kenny Rogers (better version by Tinsley Ellis iffn' you like the blues like I do) while I borrow your words. My story/rant isn't the same as in the song - not even close. The words work and that is what makes it :)
As some of you may be aware (others not so much or at all) I have been quite ill for a long time. Not the stuff that I have chronicled previously in this writey/thinky thing I call one of my blogs. It started to be noticeable last summer, right around July and my symptoms were intermittent but increasing. The extreme fatigue which I passed off because I am vehemently opposed to being lazy, just made me think that I had overdone it a time or two...ok so a lot. The gastrointestinal issues are a horror story all their own. To put it lightly - I poop...a lot 20+ times a day every day. Gross huh? Oh just wait the disgusting details are about to unfold. (If you have a weak constitution please skip to the next paragraph) It is urgent, watery, bile and blood filed. Seriously, what's a girl gotta do to get a solid BM around here?! I haven't held food in since I don't know when. My appetite has simply vanished. Not much fun to make amazingly tasty meals when I don't get to eat them. Then there is the nausea/vomiting that goes along with it. I have lost 50 pounds since December. The week between my colonoscopy and endoscopy I lost 10 pounds.All the muscles in my body lock up on me - in my stomach, the arches of my feet, my back, my stomach, the throat muscles when I yawn and the ever present leg cramps. Then there is the abdominal pain. Pain on my right upper quadrant that is bulged out about an inch farther than my left side. The left side, oh yes - this is where it gets fun. Lower left quadrant had a mass discovered during a ct scan at the ER. It hurts there a lot and has been getting worse, more strange than that is that it is visible where the mass is on the outside of my body. You are thinking a protrusion, right? Wrong...it is actually sunken in where the mass is. Funny thing is: I was not supposed to have anything there. Not funny haha, funny weird. My hair started falling out again really bad as well back in July, that is somewhat under control right now. Painful blood sugar crashes from not being able to retain nutrition and nagging back pain. Sleeping is either hit or miss, not a lot of in between and medications seem to be keeping me off kilter on that still. Then there is the odd swelling in my left foot and ankle. Oh yeah, don't forget the vision changes that really suck too.
That is plenty to send a person to the doctor, but I waited because I didn't have insurance. Paying out of pocket to be treated for pneumonia last August was painful enough. I waited some more because we were in the busy season at work. I waited longer because while my personal schedule is pretty cut and dry, there were other people in my office going through medical issues that needed attention as well so I felt like it was my duty to be solid. We talked at home about me going to the doctor and I pushed it off some more because I knew there was a lot wrong and I was scared. Then about a month ago I finally broke, I was too scared not to go. None of my clothes fit, I can't hold food in and was just generally miserable. I called my doctor as I sat in my office crying with one of my coworkers. We were both worried and knew that it had just went on too long.
The doctor ordered some blood work and sent me to a GI specialist. Blood work is no easy task for me. No joke, all of my veins in my arms are blown out (spend a month in a half in the critical care unit and see how bad they scar up - oh yeah there is the dehydration issue). I got a prescription antacid and was on my way. They made the referral and it was the beginning of the waiting. Two days later I was back at the dr's office again. Still without my appointment for GI specialist and still no results on the blood test. This changed things and put a rush on it. Magically, my tests results showed up while at the visit and it isn't great news. Low platelets and elevated liver enzymes. WTF?! Again?! I don't drink alcohol, rarely drink soda anymore, we eat reasonably and I am active. Where is this coming from? I thought I had done the work I needed to in order to let my liver heal. So this time, antibiotics, anti-nausea medicine and suppositories. Yuck! As if my b-hole didn't feel awful already from the acidic waste being projected out of it. The dr pushed for my GI appointment and I got a call not even 5 minutes after I got home. Got in to see the GI doc a couple of days later - basic intake nothing to get all worked up about. They scheduled a colonoscopy and it was on my way. The following day hemorrhaging. Can I get a break yet? GI office sends me to the ER and we are scared. It's my daughter's birthday and her talent show. Talk about devastation for me and for her. I am ALWAYS at my kids' functions. More blood work, x-rays and a ct scan. Now let's add some pain-killers to the medication list. *sigh* Now, they moved my colonoscopy up and that was 2 days later. Colonoscopy went and I was down for a couple of days. Heed that no strenuous activity warning they give you LOL! With as many biopsies as they did, some cauterization and removal of things in my colon - overdoing it was bad. The next Wednesday it is off to get the throat scope done. Results of the colonscopy came at that time and now some new problems. 2 days later it is off to get an ultrasound (so I was told) OB/GYN scheduled me to come in for an ultrasound when the lone tech they had was off for the day. WTF?! I will get into this later. I opted not to return there and instead asked my doc to refer me elsewhere. Monday I had and appointment with the GI only to have us mutually come to the conclusion that before jumping the gun on the treatment options. My liver functions/swollen spleen/low platelets are enough to make us want to find out what is causing it. Today, I had my ultrasound finally! Now just waiting on results from that and my additional blood work to see where we go. Although when I was getting blood work done today the vein they went through in my wrist is not infected and causing celluitis in my right hand.
None of the preliminary diagnosis was good and I have heard 15 of them as possibilities if I have heard one. I am scared for me, my family and my friends. My kids are a wreck watching me go through this. My husband and I cry more often than not it seems like. My friends and coworkers are frightened. I am watching two of my other friends go through their own medical struggles right now and I won't lie - my eyes are leaking like sieve most of the time. Not only does my heart break for their pain, but I identify with it. Gone are the days of my steely demeanor and inpenetrable barriers. I love a little more deeply these days, cherish the joy I can find and am learning how to slow down when I need to. Every day that we are living, we are also dying. Trying to focus more on the living is what is keeping me alive. Don't stress the "what ifs" and allow yourself forgiveness for the tasks you can't accomplish on the really rough days.
Seems the biggest lesson maybe isn't patience after all. The biggest lesson was how much love I have had. I have the most wonderful, amazing, incredible support system. To all of you who have been kind, helpful, supportive, loving, caring and just downright concerned - I love you all!
Blessings ~ Andrea
As some of you may be aware (others not so much or at all) I have been quite ill for a long time. Not the stuff that I have chronicled previously in this writey/thinky thing I call one of my blogs. It started to be noticeable last summer, right around July and my symptoms were intermittent but increasing. The extreme fatigue which I passed off because I am vehemently opposed to being lazy, just made me think that I had overdone it a time or two...ok so a lot. The gastrointestinal issues are a horror story all their own. To put it lightly - I poop...a lot 20+ times a day every day. Gross huh? Oh just wait the disgusting details are about to unfold. (If you have a weak constitution please skip to the next paragraph) It is urgent, watery, bile and blood filed. Seriously, what's a girl gotta do to get a solid BM around here?! I haven't held food in since I don't know when. My appetite has simply vanished. Not much fun to make amazingly tasty meals when I don't get to eat them. Then there is the nausea/vomiting that goes along with it. I have lost 50 pounds since December. The week between my colonoscopy and endoscopy I lost 10 pounds.All the muscles in my body lock up on me - in my stomach, the arches of my feet, my back, my stomach, the throat muscles when I yawn and the ever present leg cramps. Then there is the abdominal pain. Pain on my right upper quadrant that is bulged out about an inch farther than my left side. The left side, oh yes - this is where it gets fun. Lower left quadrant had a mass discovered during a ct scan at the ER. It hurts there a lot and has been getting worse, more strange than that is that it is visible where the mass is on the outside of my body. You are thinking a protrusion, right? Wrong...it is actually sunken in where the mass is. Funny thing is: I was not supposed to have anything there. Not funny haha, funny weird. My hair started falling out again really bad as well back in July, that is somewhat under control right now. Painful blood sugar crashes from not being able to retain nutrition and nagging back pain. Sleeping is either hit or miss, not a lot of in between and medications seem to be keeping me off kilter on that still. Then there is the odd swelling in my left foot and ankle. Oh yeah, don't forget the vision changes that really suck too.
That is plenty to send a person to the doctor, but I waited because I didn't have insurance. Paying out of pocket to be treated for pneumonia last August was painful enough. I waited some more because we were in the busy season at work. I waited longer because while my personal schedule is pretty cut and dry, there were other people in my office going through medical issues that needed attention as well so I felt like it was my duty to be solid. We talked at home about me going to the doctor and I pushed it off some more because I knew there was a lot wrong and I was scared. Then about a month ago I finally broke, I was too scared not to go. None of my clothes fit, I can't hold food in and was just generally miserable. I called my doctor as I sat in my office crying with one of my coworkers. We were both worried and knew that it had just went on too long.
The doctor ordered some blood work and sent me to a GI specialist. Blood work is no easy task for me. No joke, all of my veins in my arms are blown out (spend a month in a half in the critical care unit and see how bad they scar up - oh yeah there is the dehydration issue). I got a prescription antacid and was on my way. They made the referral and it was the beginning of the waiting. Two days later I was back at the dr's office again. Still without my appointment for GI specialist and still no results on the blood test. This changed things and put a rush on it. Magically, my tests results showed up while at the visit and it isn't great news. Low platelets and elevated liver enzymes. WTF?! Again?! I don't drink alcohol, rarely drink soda anymore, we eat reasonably and I am active. Where is this coming from? I thought I had done the work I needed to in order to let my liver heal. So this time, antibiotics, anti-nausea medicine and suppositories. Yuck! As if my b-hole didn't feel awful already from the acidic waste being projected out of it. The dr pushed for my GI appointment and I got a call not even 5 minutes after I got home. Got in to see the GI doc a couple of days later - basic intake nothing to get all worked up about. They scheduled a colonoscopy and it was on my way. The following day hemorrhaging. Can I get a break yet? GI office sends me to the ER and we are scared. It's my daughter's birthday and her talent show. Talk about devastation for me and for her. I am ALWAYS at my kids' functions. More blood work, x-rays and a ct scan. Now let's add some pain-killers to the medication list. *sigh* Now, they moved my colonoscopy up and that was 2 days later. Colonoscopy went and I was down for a couple of days. Heed that no strenuous activity warning they give you LOL! With as many biopsies as they did, some cauterization and removal of things in my colon - overdoing it was bad. The next Wednesday it is off to get the throat scope done. Results of the colonscopy came at that time and now some new problems. 2 days later it is off to get an ultrasound (so I was told) OB/GYN scheduled me to come in for an ultrasound when the lone tech they had was off for the day. WTF?! I will get into this later. I opted not to return there and instead asked my doc to refer me elsewhere. Monday I had and appointment with the GI only to have us mutually come to the conclusion that before jumping the gun on the treatment options. My liver functions/swollen spleen/low platelets are enough to make us want to find out what is causing it. Today, I had my ultrasound finally! Now just waiting on results from that and my additional blood work to see where we go. Although when I was getting blood work done today the vein they went through in my wrist is not infected and causing celluitis in my right hand.
None of the preliminary diagnosis was good and I have heard 15 of them as possibilities if I have heard one. I am scared for me, my family and my friends. My kids are a wreck watching me go through this. My husband and I cry more often than not it seems like. My friends and coworkers are frightened. I am watching two of my other friends go through their own medical struggles right now and I won't lie - my eyes are leaking like sieve most of the time. Not only does my heart break for their pain, but I identify with it. Gone are the days of my steely demeanor and inpenetrable barriers. I love a little more deeply these days, cherish the joy I can find and am learning how to slow down when I need to. Every day that we are living, we are also dying. Trying to focus more on the living is what is keeping me alive. Don't stress the "what ifs" and allow yourself forgiveness for the tasks you can't accomplish on the really rough days.
Seems the biggest lesson maybe isn't patience after all. The biggest lesson was how much love I have had. I have the most wonderful, amazing, incredible support system. To all of you who have been kind, helpful, supportive, loving, caring and just downright concerned - I love you all!
Blessings ~ Andrea
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