I'm starting to go crackers. Even my manatee tattoo looks depressed by all my pessimism. I can't make the doctors office get their shit together. I can't make them schedule that surgery. All I can do is be the crazy lady that calls every day, and eventually they will make something happen. In the mean time, I have to do something to take my mind off all this. I can't go to the gym and I fatigue really easily, but I'll just push on between naps. When I finally have this surgery, I'm going to be laid up for a while, so now is the time to do everything I can to prepare. I'll wash my laundry and pack a bag (if I end up in the ER again, they're sending me straight back to Wichita so I might as well). I'll clean my house and find all my coloring books. I may not be able to put one foot in front of the other, but by George, I can crawl.
Call me. Call me anytime. Call me?
I've grown accustomed to waiting as I've had years and years of practice with all my medical conditions. This has not necessarily developed my patience skills. I'm really not good at all the waiting (because I also have anxiety and panic attacks - butt loads of fun). So here I am, sitting in my living room, waiting for the doctor's office to call and listening to my very vocal cat scream at the top of her lungs for fun. To say my nerves are raw is an understatement.
I keep trying to convince myself to shower and prepare the guest room for after surgery (or at least break out a coloring book), but it's like my brain is paralyzed. I've been reading up on colostomies and surgical menopause and anything else I can think of that might go wrong. This is actually soothing. I prefer to know what can happen and be prepared. It's less terrifying when I am emotionally prepared to handle the possible outcomes. There are so many possible outcomes and sitting here, waiting, is driving me up the proverbial wall! I just want to get this over with.
I know that there are things that have to happen in a certain order. I know that there are other people who take precedence over me, but right now, I just want a phone call. I just want to have a time and date. Somebody please pick up the phone and press the little buttons and just tell me! You're killin me smalls!
About that time...
Ok, so I'm having surgery. Even though I knew this would probably happen, the initial news made me want to bust out a paper bag and do some panic breathing. Surgery is traumatic enough for a person with normally aligned insides, for me it is an adventure into science fiction level medicine. They are going to perform a total hysterectomy (which means everything but the kitchen sink goes) and they are going to do an appendectomy for good measure.
The last time they attempted this surgery was in October of last year at Hays Hospital. They closed me up after resorting to a seven inch open incision because their facility simply was not equipped to handle that kind of death star level nonsense. Honestly, even Salina said no way and told me to move on up to Wichita. Now, they have decided that the merits of removing everything outweigh leaving it in. I've already had an endometrial ablation (Google it) and now I've formed a very large cyst.
I've got a general surgeon who specializes in GI and an OB that specializes in cancer (I don't have cancer, it's ok, she just knows her way around really tricky insides). I've been told that the surgery will take hours and that there are many potential, although statistically unlikely problems that could arise. My bowels are all fused together like a big old hair ball. They are going to have to cut through all of that in order to lift my intestines out of my body and get to my uterus (which is also fused to everything else with scar tissue). There is a possibility that some of my bowel will be damaged during the process of cutting everything loose; if there is enough damage, or too much has to be removed, I will end up with a colostomy (the little bag on the outside of your body). There is also the potential for infection and also the possibility that it could be so bad that they simply can't do the surgery without endangering my life (the GI informed me that this was very unlikely).
I am supposed to receive a phone call by this coming Wednesday informing of the date of surgery. Assuming everything goes smoothly, I will have to be in the hospital at least a week and then have a recovery time of 6-8 weeks (maybe more depending).
I'm scared, not gonna lie, but I also know that this needs to happen. I know that whatever happens, I'll find a way to make it through. I've never done anything half way in my entire life, especially medical conditions. Go big or go home right? Well, wish me luck. Things are about to get interesting.
I watch too many medical dramas on TV. They are often very entertaining, but horribly unrealistic. Of course the romance and rivalry is over-dramatized and they have at least one bigger than life case every episode, but that's not what makes it unrealistic. In real life, you hardly ever see the doctors. Nurses take your vitals, empty the hat in your toilet, give you your meds, and answer your call light when you're barfing at 4 a.m. You might be in the hospital for two days and never see a doctor until they are prepared to dismiss or diagnose you. And lots of times, you don't get diagnosed. What they really do is rule things out one by one, and if insurance won't pay for a certain test, then they stop looking and tell you that they haven't found anything conclusive and it's time to go home.
You almost never get a test right away. In the medical drama everything is do this or do that "stat", but unless and until you are actually coding, things are almost never "stat". We'll do this test or that test in a day or a week or a month and get the results back to you in a couple of weeks. And the doctors don't do those tests either. A tech who went to school to learn how to operate that expensive machinery does the test, and then, later a doctor, sometimes not even a doctor at that facility, reads the test.
Doctors also do not pursue finding the cause of your illness with a single minded passion. They rule out the most likely causes, jack you full of pain killers (if you are lucky) and send you off to figure life out on your own.
You know what I would like to see? A medical drama that tells it like it is. Show the nurses who work twelve hour shifts covered in vomit and trying to console a delusional screaming patient. Show the pharmacists who give out all of the medication (does anybody know anything about a hospital pharmacist? Cause I sure don't). Show the frustrated patients when they get home and are lying in bed suffering in pain and waiting for the weeks it will take them to get into a specialist. Show their frustration and heartbreak when, after all that waiting, the specialist can do nothing for them. Show the medical system the way it really is. That's enough drama to last a lifetime.
Today begins week three of being away from home. At least now I have my doggers with me. The poor beasts aren't sure what's going on. Ian and I have never been apart this long in the whole time we have had them. I haven't seen my naughty kitty since this all started. I'm thankful that Ian has thus far been able to come up on Saturdays. I know it's pretty standard to tell people in situations such as these to stay positive and look on the bright side, but sometimes people just need a hug. Sometimes people just need to get mad and yell or cry. And sometimes, that is ok too.
My pain levels are now manageable with four standard ibuprofen and I've only needed the prescription stuff at night before I go to bed. I've been holding down more foods and have managed to increase my calorie intake to over 1,000 calories every day (I record everything I eat to submit as evidence to the doctor). My GI spasms are less frequent, and I've been sleeping through the night.
My hope is that I get to go home next week. Considering it's taken a month just to get in to the surgical specialist for a consult, I honestly don't foresee any decisions being made for at least another month (just being realistic). It is also very possible that they will decide not to operate as living with issues is the safer alternative. At this point, it is reasonable to expect that I will have to learn to live with my symptoms.
I am anxious about my cyst rupturing. My body would just reabsorb the fluid, but a cyst rupture is terribly unfortunate business. I honestly don't know what to expect in the weeks and months ahead, but for now, I must screw my courage to the sticking place and soldier on. Please cross your fingers that I get to go home soon.
This too shall pass...
Oh my goodness, these days have been trying my patience. I have had many new adventures since my last blog post and let me tell you, I now understand how people die waiting for the medical system to make room for them. Short recap, this all started on April 25th with uncontrollable barfing which landed me in the Hays ER. In the days since, I have been to the Hays ER a total of 5 times; the Salina ER 1 time (with a 3 day stay at the hospital); and the Wesley ER in Derby 1 time. So far, I know the following things: I do not have an ulcer, a bowel obstruction, or any kinking of the bowel; I do have a small hiatal hernia (which is apparently nothing to worry about), a 5.9 cm cyst which may or may not be on my ovary, and a cocoon abdomen (translation: so many adhesions everyone is afraid to operate on me).
At this juncture, I have lost 12 pounds due to the fact that my GI system can't remember what to do with food (what is this? I stab you with this?). I am on an extremely bland diet and, knock on wood, I haven't had any Linda Blair repeats for over a week. Unfortunately, my intestines still try to kill me. For those of you who squeam easily, please skip this next sentence or so. I rarely experience pain of this magnitude (and I experience a lot of pain so that is saying something), but most times when I eat, especially first thing in the morning, I feel like my insides are trying to move a bowling ball filled with shrapnel and glass. I get fiery hot and start sweating like it's an aerobic work out. Then, the pain passes through me like a drunken mule on a rampage (my greatest fear is that I will pass out and fall off the toilet and someone will find me wedged between the toilet and the wall soaked in sweat and lord knows what else). Eventually it passes and I go lay back down to sleep off the horror.
I also have intermittent pain in my back and abdomen (presumably from the cyst). I've run out of the good drugs and have down graded to the ok stuff. For the moment (cross your fingers) I am taking less of it. My days consist of Pinterest, Facebook, a matching game on my phone, and naps - so many naps.
The specialist originally scheduled me for May 22, but after a bout of hysterical sobbing on my part, the nurse put me on a wait list and I got in round about May 10. I called the office to make sure they had all my records, but when I got there, they didn't. They said they would have to consult some people and get back to me (it could take up to 2 weeks). I had more issues, the specialist didn't know what to do, and now I have been referred to a surgical group. They are hopefully getting me in next week some time, but I still haven't had a confirmation about the time of the appointment. I won't believe it until I get that call. Also, this is a consultation and may or may not provide me any answers/solutions. Even if they do decide to operate, it could be several weeks before they get me in and (I'm trying not to think about this now) any operation they do will be much more risky than it is for your average bear. There is a lot that could go wrong.
Now, I sit and wait and hope that they give me some sort of answer that tells me whether I have to quit the awesome job I just started. Man, this is lame. I think I'm going to go take another nap. I can't wait to be a real girl again. Oh yeah, as a final note. I've had to cancel my long anticipated Oregon Trail trip with my besties as I am falling apart and now have a crap ton of medical expenses to pay. Sigh. It is what it is. This too shall pass.
Stop the bus...
Waiting sucks. I'm waiting to hear back from the specialist, and in the mean time, I am super saturated with pain killers. Last night, I decided that I was all better - that the storm had passed, the cyst has magically healed itself, and that I was going to go back to life as usual. I did not take my pain medicine at the six hour mark. I told Ian that I was healed. He wasn't convinced. I also did not take my pain medicine at the seven or eight hour mark and took this as evidence that my previous hypothesis was correct. Then, somewhere between hour eight and nine, my side started throbbing and my insides started mumbling something about a revolt. The strange rumblings started to feel an awful lot like nausea and I suddenly had a flash back to the last 5 ER visits.
I promptly took my pain killers, and anti-nausea meds, and prescription strength Prilosec, and lay down to pray that God would be merciful on a poor fool. When Ian came to check on me an hour later, I told him that maybe I was not as miraculously healed as I had previously assumed. He just patted me on the head, tucked me in, and slipped out as I went night night.
I think it's gonna be another long day. Wish me luck.
The one two punch...
I am now "that" person. I've just called the doctors office after my doctor and the ER doctor have already called just trying to see if they could please, please find a place for me in the schedule. If any of you have see my Facebook posts, then you will know that it's been a long, long last week and a half.
It all started on the night of Tuesday, April 24th. I was having raging stomach pains, like glass was trying to move through me and I started throwing up and couldn't stop. Every half hour between 9:30 p.m. and 4:00 a.m., I was awoken by this terrible pain. At 4:30, I finally dressed and drug myself to the ER (Ian was sleeping and had to work, I could have woken him but I wasn't exactly in the most coherent state of mind. I realize now that I should have woken him).
In the ER, they gave me morphine for pain, zofran for nausea, and then took an x-ray (they didn't find much out of the ordinary except that I was a bit "backed up"). So they sent me home with instructions to drink half a bottle of Miralax dissolved in 64 oz of sports drink. Yes, that is a lot of Miralax, and no, it did not work as you'd expect (at least not at first. Let's just say it's a good thing I had left over Depends from my gallbladder surgery). I felt awful, but better than the night before, so I just decided to let it pass (no pun intended). Then all hell broke lose again. Around 7 or 8 that evening (Wednesday, April 25th), the debilitating pain started surging through my guts again.
I was vomiting like Linda Blair and then just kept going when there was nothing left. There was a horrible cacophony of dry heaving, crying, and just a touch of yelling. Around 9, Ian put his shoes on and took me back to the ER. More fluids, morphine, and zofran followed by a CT. This time they found a 7cm cyst on my right ovary, but said that would not cause these symptoms. They gave me a GI cocktail to drink that had lidocane (the stuff that numbs you at a dentist office). They told me to get in touch with my OB and in the mean time, sent home prescriptions for intestinal cramping and a bunch of other stuff that is now a blur. We went home in the wee hours of the morning and I immediately made an appointment with my doctor.
My brother took me to my appointment around 9 a.m. on Thursday April 26th. My doctor was extremely sympathetic and prescribed me medication for pain and something else to help things move (they were still thinking it was an intestinal issue at this point). I didn't even make it to the pharmacist. Little brother ended up dropping me back off at the ER for more fluids, morphine, and zofran. They told me that there wasn't much more they could do and that they had contacted my OB and I was to set up an appointment for the next day. Before I left, the morphine was already starting to wear off and I had started dry heaving into the little pink barf pan they give you (I should sideline here to say that I had brought my own bucket as I couldn't seem to stop vomiting). While balling and heaving, they gave me a shot in the hip of morphine and discharged me. I tried taking the 4-5 different prescriptions they had given me, but nothing was working. By 10 p.m., I was a shell of the human being I had been before this all started. Ian loaded me and my bucket into the car and drove us to Salina to meet my mom. We just decided to stop at the ER there as it was clear I wouldn't make it much further.
My poor, sweet husband was himself exhausted and had no idea how to get to the Salina hospital when I started ugly dry heaving in the bucket again. We drive a Prius, let's just say it was close quarters. I gave him directions through bouts of tossing my cookies, and luckily we got there safely without him tossing his. At around 11:30 p.m. we got registered at the Salina ER.
I can't express to you the kind of pain I was in. Really, it felt like a horrible alien creature was trying to shred it's way through my insides. This time, they gave me morphine and compazine. I will remember that drug as long as I live. It induced a horrible panic attack, so on top of being in great pain, I began to trip balls. I was shivering and freaking out and just wanted to run away. Mom tried to soothe me and very sternly told me that my IV was staying in (thanks mom for not letting me rip it out and run through the ER screaming). In the midst of all this, they discovered that I also had a bladder infection and decided to hell with it, and admitted me. Finally, at 4:00 a.m. on Friday, April 26th, I was taken to my room at Salina Regional Hospital.
I stayed at the hospital until Monday, April 30th. They scoped me, x-rayed me, CAT scanned me and came to the conclusion that my bowels are fine and so is my kidney. This is the result of the very large cyst on my ovary. Unfortunately, they can't remove said ovary at that facility due to my extensive adhesions. They released me back into the wild after I ate my first solid food in days, and set up an appointment with my OB for May 10. Dude.
Suffice it to say, that my first night home did not go well. The vomiting began again, and I had to return to the Hays, ER on Monday night. Another trip to my doctor who put me back on a liquid diet and a strict pain killer regimen. God bless pain meds. I FINALLY slept through the night. I'm delirious, weak, covered in bruises (from all the blood draws and IV's), but I'm sleeping. And, as I'm writing this blog, the OB called back and said that they can squeeze me in at 10:45 tomorrow! I'm not sure what the future holds, but whatever it is, say a prayer for me. I'll let you know how it goes.
Creating my own sunshine 🌞