It's an acronym. (abbreviation beginning with the first letter of each word) For Fuck's Sake! That's right, pulling out the foul language already.
I am frustrated, immensely frustrated. Worse yet, I have no outlet with this frustration. Sure, sure you are thinking "What the eff is a blog then?" Not the same thing at all. I want someone to talk with, not just to. That sounds crazy, right? There is only so much I can discuss with my husband without feeling like we have more of a vent session than a relationship. My friends have enough going on. (That is their business...expect no explanation) Add to that the friends I have are all the same as my husband, which is normally a good thing. Somebody that isn't so close to the situation, someone that would have a different perspective. Therapy? Um no...I am not even eating lunch at all this week just to save us some money and make sure the rest of the house can eat. Therapy isn't in the financial realm of possibilities at all.
What does all this frustration come from? There are a lot of things. One of the few things that I feel willing to discuss somewhat openly is my medical situation. I was recently diagnosed with fibromyalgia in addition to the multitude of other medical problems I have. This diagnosis came as an effort to just put a name on it so that it could be treated. We have to start somewhere, right? The only reason it isn't being called Lupus is because I was missing one blood marker that qualifies it (a marker that about 30% of people with Lupus do not have)FFS! My doctor told me this diagnosis was essentially a stop gap until we could find out what is really wrong. That leaves some pretty scary possibilities out there. Scary still is dealing with it in the meantime.
Stress makes you sick. Doctors make sure they let you know that all the time too. Avoid stress is basically like saying, "Just hurry up and die, because you aren't made to withstand all that is this life". At least that is what it feels like. So what do you do when being sick is causing stress?! The doctors have decided to throw a pill at it every time. Boy, do I hate that "solution". The amount of medications that they put me on, only to have some nasty side effect crop up or for it not to work at all and end up being taken off of is astounding. For now, they are going to try a combination (only 2 pills a day!) that seems pretty risky but had a day of decent results. I am still stressing about having to go back on one of them here in a few days, it is an extremely strong medication and it didn't work out so well the first time.
The story there: Fibromyalgia is a complicated disease and treating it is difficult. Some medications you have to specifically have fibro listed as a diagnosis to even be issued them, I was put on one of those last Wednesday. The doctor and I should have both communicated a better, so I am not about to put this all on them - but it was a dangerous mistake that I won't make again. Last Wednesday, my doctor put me on a new prescription because the current one wasn't as effective in reducing the symptoms as we would have liked it to be. My mistake: I thought this was to replace the prescription I was taking. Their mistake: these two drugs are listed not to be taken together and they did not express that contrary to the manufacturer warnings, it was to be taken with my other medicine. What ensued was about the worst possible outcome ever. FFS!
Wednesday night, I went over the info from the pharmacy and took the new prescription. Everything was fine for about a half an hour and then all hell broke loose. This medication is supposed to be time released, but my over active stomach acids made sure it all went in my system and right away. You know those terrible things they warn about in the commercials? Yeah...that shit is SO real! I couldn't fall asleep, I was shaking and sweating, getting sick profusely and scared out of my wits! To top it all off, the next day was the first day of school. There were 2 little girls clamoring to get their hair done and look cute for their first day of school. Steadying the shakes as much as I could, I worked rapidly to get them looking first day good. Each movement of my hand was a carefully planned and executed maneuver of mental fortitude, fighting off what I knew was inevitable. My husband kept coming into the bathroom to check the progress and worriedly look over my obviously quaking body. As I was finishing up the second girl's hair, I flushed hard in my face and my ears began to ring, the shaking became more violent and all the heat flushing in my face ran away. "You're done, you can't do any more", my husband said as I struggled to flip the light switch off. I didn't even have any words to be able to make at the moment, all my focus was set on getting to the bed or somewhere soft, I knew what was coming. 7:15am on the first day of school and I launched into a full grand mal seizure from my medication. I laid there on the bed conscious but unable to control my body. Every muscle was tensed, everything hurt and there was nothing I could do except to ride it out. It wasn't the first one I have had, in fact, they are fairly common for me a few times a year for more than a decade now. This one was not like any other one before though. Worst of all...my husband watched all of it happen. Best of all...we both knew what was about to happen and he was able to keep the kids from seeing any of it.
Having a seizure the first morning of school = no bueno. We have 4 kids to get to school at 3 different schools. There was no way that I could drive at this point, nor would I ever stupidly put my children in danger that way. It took everything in me to just get in the van and walk the kids in to the school.We got the school that was open first out of the way and realized that we were running about 5 minutes behind to get to the second school. A quick call to the office at the second school, letting them know we would be late and we were on our way. This is where it really gets stupid. Mind you all, we have done everything we can to get everyone where they belong as close to on time as possible after having a MAJOR medical emergency. We are less than 2 blocks from the school when my husband's phone rings and we are really in too much of a hurry to address it and I was worried about protecting the little girl in the backseat. Turns out that it was the other parent of the child we were taking to school. Until my husband got out of the school, he didn't listen to it which was a very good thing. He was left a message that he was five minutes late taking his daughter to school, it was unacceptable and she thought she deserved an explanation and that she was calling her attorney. Oh wait...it gets better. The first day of school was a time that his daughter was scheduled to be with us, so what was the point in even showing up to the school anyway? I am sure you came up with some logical answer like caring about school and attendance. Nope - this is the very same person that feels it is not only ok, but socially braggable to take your child out of school for shopping or crossing state lines in a blizzard for a shopping trip. Also the very same person that won't come to Kindergarten graduation or the only school concert she had last year, not even the introduction to 1st grade or meet the teacher for 1st grade. Really...why would there be an expectation that she would show up the first day of school for second grade? If there was such a concern over the child being late, wouldn't checking in at the office to see if we had called have been the first avenue explored? All of it could have been avoided with that simple action, but no...throwing temper tantrums is a much better option for the narcissistic that desperately need more attention. Did I mention that it gets better? That is probably not the best word to use because it wasn't any better. What happened in the school was positively disgusting. The child was addressed and criticized/ questioned about being late. "Why weren't you here on time? You know that school starts at 830 and you are supposed to be on time". That, my readers, is complete and total bullshit. To hold a child accountable for their own scheduling and transportation at 7 years old is pretty fucking ridiculous by any means. To make a scene in front of the child's classroom is wrong . She took out on her child when she should have been adult enough to address it with adults only, knowing that at 7 she isn't responsible for any of it, let alone the fact that she didn't deserve to have it taken out on her. The only thing that little girl was responsible for was buckling her seatbelt. THAT is what is unacceptable - putting the child in the middle when she had no control over the situation at all. Go ahead and talk like that to your child because you are too afraid to talk to the adult. Rip the child apart because they can't stand up for themselves so you can feel like you were in charge. FFS!
I am understandably frustrated. While my medical issues are coming under control, a year of this has really worn me down. Due to medical issues, I have lost almost 100 pounds in the last year (probably a little over that) Take a look at a picture from the wedding last October and then look at me now, it is pretty scary. There isn't much end in sight there either until well after the heital hernia is fixed. Add to the medical stress all of the normal work stress and raising children, factor in one ex who makes drama instead of helping. Now multiply that by at least 4 and it all equals a FFS! I just need a little break before I break. Maybe that is precisely what needs to happen though. Maybe I just need to address whatever it is at the moment and let my reaction be whatever it will. Throw care to the wind, get back to my roots and just act like a complete savage berserker (Savage for the Iroquois and berserker from the Germanic warriors that went into a fury and rage in battle) letting each and every jerk that crosses me get what they deserve. *sigh* Unfortunately that is not going to happen. It is nice to think about, but I am far too responsible to go that route. For now it will just be a *SMH* and a *FFS* to get me through.
Thanks for listening, this had been really helpful. Seems like I just needed to talk to myself.
Monday, August 26, 2013
Friday, May 24, 2013
Just Dropped in To See What Condition my Condition is In Part 2
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
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
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
Monday, January 7, 2013
And a Time to Every Purpose Under Heaven
I am not a Christian, if you are that doesn't make you right or wrong. That I am not does not make me right or wrong. We can all be good to one another despite our religious beliefs.
Everyone knows that has ever laid eyes on this blog that I am divorced. Some even know that surprisingly enough my ex and I have become friends. This wasn't always the case - obviously we divorced for a reason. Now both of us seem to have the proper focus and that is the ultimate well being of our children. That sort of common ground has made it much easier for us to make decisions, arrange schedules and co parent our 3 children.
The reason for this post is not a joyous one at all (well, depending on your point of view it could be) My eldest daughter recently went to sing at a nursing home with her choir class for Christmas. She was nervous and didn't know what to expect there. We had a talk about nursing homes and the sad reality that many of those people who cared for others have all but been abandoned at the nursing home. People's lives get busy, they forget about taking the time to visit, all of their family might be gone, they have been placed in a home far away from their loved ones due to their medical needs...etc. I encouraged her to talk to the residents, to help make them smile. She took a lot home that day, I was deeply proud of the young woman that she is becoming.
The following night, my ex arrived to pick up the kids for their weekend visit. We had been talking about his two grandmothers being in the same nursing home and the different medical problems they were having. I asked him to do something, something not for myself - something for others whom I cared about. I asked him to take the children and visit his two grandmothers in the nursing home over the Christmas holiday. One of his grandmothers in her 90s and the other in her 80s, they are getting up there and it felt pressing and important that the children see them. He nodded and agreed, said he had been thinking about it and planning on it. That Christmas day, two elderly women got to spend time with a grandson and three of their great grand children. He got to give them the gift of joy for Christmas. So the tangibility on that one isn't great (often tangible things don't hold the greatest value any way ;)
Two days ago, my daughter sadly told me that the oldest of her two great grandmothers had been taken to the hospital and that it didn't look good. This morning, my ex texted me to tell me she had passed. There is a sadness for someone who has experienced a loss. My sympathies go out to the family, to my former family, to my children and the father of my children.
I was glad that I butted my nose in where some might say it didn't belong. I was glad that my ex and I were able to talk about the importance of not forgetting our elders and show our children the value of the urgency of life. My children and their father got the opportunity to spend one last Christmas with her, they will always have that. They will always know that good that they did that day for those two women. It is sometimes very laborious to put others before ourselves, this was not at all the case. I asked my daughter to make sure she called her father tonight. If she is to become a kind, caring and loving woman - it is up to me to give her an example of that.
Don't forget those who have already gone before us, they are those who trodded the path so it is easier for us to travel. If youi have family in a nursing home...go see them. It might make their day and yours too.
Andrea
Everyone knows that has ever laid eyes on this blog that I am divorced. Some even know that surprisingly enough my ex and I have become friends. This wasn't always the case - obviously we divorced for a reason. Now both of us seem to have the proper focus and that is the ultimate well being of our children. That sort of common ground has made it much easier for us to make decisions, arrange schedules and co parent our 3 children.
The reason for this post is not a joyous one at all (well, depending on your point of view it could be) My eldest daughter recently went to sing at a nursing home with her choir class for Christmas. She was nervous and didn't know what to expect there. We had a talk about nursing homes and the sad reality that many of those people who cared for others have all but been abandoned at the nursing home. People's lives get busy, they forget about taking the time to visit, all of their family might be gone, they have been placed in a home far away from their loved ones due to their medical needs...etc. I encouraged her to talk to the residents, to help make them smile. She took a lot home that day, I was deeply proud of the young woman that she is becoming.
The following night, my ex arrived to pick up the kids for their weekend visit. We had been talking about his two grandmothers being in the same nursing home and the different medical problems they were having. I asked him to do something, something not for myself - something for others whom I cared about. I asked him to take the children and visit his two grandmothers in the nursing home over the Christmas holiday. One of his grandmothers in her 90s and the other in her 80s, they are getting up there and it felt pressing and important that the children see them. He nodded and agreed, said he had been thinking about it and planning on it. That Christmas day, two elderly women got to spend time with a grandson and three of their great grand children. He got to give them the gift of joy for Christmas. So the tangibility on that one isn't great (often tangible things don't hold the greatest value any way ;)
Two days ago, my daughter sadly told me that the oldest of her two great grandmothers had been taken to the hospital and that it didn't look good. This morning, my ex texted me to tell me she had passed. There is a sadness for someone who has experienced a loss. My sympathies go out to the family, to my former family, to my children and the father of my children.
I was glad that I butted my nose in where some might say it didn't belong. I was glad that my ex and I were able to talk about the importance of not forgetting our elders and show our children the value of the urgency of life. My children and their father got the opportunity to spend one last Christmas with her, they will always have that. They will always know that good that they did that day for those two women. It is sometimes very laborious to put others before ourselves, this was not at all the case. I asked my daughter to make sure she called her father tonight. If she is to become a kind, caring and loving woman - it is up to me to give her an example of that.
Don't forget those who have already gone before us, they are those who trodded the path so it is easier for us to travel. If youi have family in a nursing home...go see them. It might make their day and yours too.
Andrea
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