Wednesday, November 30, 2011
When I was in the hospital last week, I was told I would get a call to schedule an appointment with a liver specialist. I haven't gotten the call. Yesterday I called to try to get it set up and about 1245 I was told 'you'll get a call soon'. At 1130 today I still hadn't gotten a call so I called again. Apparently there is no one on staff who can schedule for the liver specialists! I just kept being put on hold and/or being transferred. Finally I sent an email to scheduling and I got a nasty phone call saying that I just have to keep waiting because she's too busy to schedule anything but she can transfer me to someone else who might be able to talk to me sooner... and I was put on hold yet again! Seriously, is there a doctor in MN who thinks being underweight (by BMI and in looks), being in horrible pain, and feeling like I'm digesting knives when eating or drinking anything (including water) is something that needs to be dealt with in less than 6 months?!?!
My co-leader on the Living with Gastroparesis sparkteam went to Temple University Hospital in Philadelphia and was treated with respect - in addition to receiving treatments. Thus, I thought I'd call and get an appointment at Temple just in case these doctors in MN are going to keep being moronic. Well even better happened. About two minutes into my story the general scheduler was already so concerned that she gave me the direct phone number to the GI special scheduler (who has the authority to get someone in immediately). I called this woman and she was great. She got me the full set of motility tests for next week (5th to 9th). That's the only opening before next year. Since my company is getting new insurance starting 1/1/12, I needed to take this - even though the appointment here in MN was for the 7th. They completely took me seriously - something I have yet to see here in MN.
So I called to cancel the appointment here in MN and tell them to not even worry about the liver specialist anymore. I got the phone number for records so I could get the test results from last week and was chewed out by yet another incredibly rude woman! Seriously, "Minnesota nice" is a bold faced LIE! Not sure I'm going to have the records in time, but I'm trying anyways.
I talked to my parents right away and my father will fly there with me, while my mother stays behind to take care of my cat. They've already scheduled a hotel about 3 miles away from the hospital, have looked into rental cars (they won't schedule until we know if we're coming back Sat or Sun), and called Delta to ask about getting a fare discount due to a medical urgency. It will be about half price but it has to be scheduled no more than 3 days in advance and might have to stay a Saturday (hence the question for the car rental). My father also called the TSA and was told I can take 3 bottles of ensure on the plane (after being declared and checked of course) because it's a medical necessity. Also working on finding out about making sure a wheelchair and/or baggage carrier is available since I'm having a very hard time walking (because of pain and lack of nutrition) and tire out easily. Looking into a few other ways they might be able to make the flight easier, but this is a start. Also we plan on only taking 1 carry on each (we can wash clothes if we have to) and my laptop. Then we don't have to worry about lost luggage or baggage fees.
Work isn't happy I'm sure - I don't think I'll have enough leave for the week. But since I just got my yearly review and it was good, plus my boss today saw me struggling and clearly in pain and said I really did not look well - so hopefully they'll be forgiving. I definitely have to have a doctor's note this time though. But still, I work in accounts payable (I pay bills) and most of my payments are due in the first 15 days of the month so that will suck. I'll do what I can, but this is my shot to finally get help - I have to put myself before my job for once!
Today has been a very emotional and whirlwind type of day. (Oh and I finally got my car back and it seems to be okay now... just in time to leave the state for a week!)
Friday, November 25, 2011
So after being up for 39.5 hours straight, I got some sleep by taking meds, felt sick most of the day yesterday, then was hoping to get some sleep and try to go to work today. Instead, I got about 2 hours of fitful sleep and feel horrible again today, so I didn't go to work again.
We did get my car back to the garage again, and they had it all day to find where it is still leaking, and now have it through Monday to tear the engine back out again to fix it. At least they said they wouldn't charge labor, and the parts are only going to be around $40. Hopefully this will fix it this time.
I was looking through the sale ads for black friday and found they had s2 of Vampire Diaries on sale for $13! So after my parents helped me get my car to the garage, we stopped on the way back to see if they still had some in the store (it was about 11 am). Not only did they have it, but they also had s6 of Supernatural on sale for $13. Add to that Ramona and Beezus and Cruel Intentions that were on sale for pretty cheap too, and that's my Xmas present from my parents. They also got me some rice krispie treats (since I can sort of digest them) and hand soap I needed.
I think my scale might be off by about 1-2 lbs, but I'm not certain. Still, as of this morning I was at 117 lbs - that means I just broke the threshold into being underweight. I've lost 40 lbs in two years without trying, wanting, or needing to. Very scary stuff.
Hoping I'll feel better this weekend. Trying to get a little more food into me, anyways.
Wednesday, November 23, 2011
So apparently the ER wanted to scare me. They told me I had a blood clot in my liver and sent me to another hospital. After spending the entire night awake (I've been awake for 37 hours straight - and I'm not heading to bed just yet) I finally got an MRI and they saw nothing. I've known since April that I have what amounts to a varicose vein on my liver, and the CT scan at the ER showed what appeared to be a blood clot in that vein. But since the initial reading of the MRI (still has to be 'officially' read) shows nothing, they think it was probably just a spurt of blood in the vein.
Since they didn't see anything on the MRI, they didn't pull GI over to see me. Instead, they're leaving me with the GI appointment on 12/7 and will call me to add an appointment with a liver specialist.
Funny thing - they sent in a nutritionalist to explain the GP diet to me. I'm sure several of you know that I know this info inside and out. Well, I taught the nutritionist several things and directed her to GPACT, in amongst everything I was telling her. Then the doctor was explaining what they didn't find, so I started asking him questions and clearly proving to him I know a lot of info about GP and related issues. He seemed a little taken aback. That was cool. Even in the ER I was showing my knowledge.
I'm not sure what to think. I just spent the last about 24 hours completely out of my mind. When I got into the hospital bed at 6am this morning I wanted to sleep. No matter what I tried, I could NOT fall asleep! I'm home now, but there are things I need/want to do so I'm still not going to be able to sleep right away. My parents came up and are going to be invading my house for several days. And just as I expected, my mother would not SHUT UP and yammered on to the doctor about something ridiculous. I kept telling her to stop but she just kept talking! You could see in the doctor's face he had no idea what the heck she was even saying.
Even with as horrible as I felt, I did have one stupid girlie moment that I have to share so you all can laugh. When I was in the ER I was not moving well at all. I needed the bathroom, so they moved the bed close, then a quite cute orderly helped me get into the bathroom. Well, he turned and bumped into me and I fell backwards so he caught me (eep!), then he turned and bumped me again and I fell again so he put his arm around my back (eep!) while I grabbed his forearm with one hand and his incredibly buff bicep with the other (double eep!). I had to hold on because a) I didn't want to fall yet again and b) didn't want to stop touching his muscles. After a few seconds I let go, but it was probably 3 seconds longer than I needed to. haha Very short lived moment, but for a few seconds I was distracted from everything going on by a very good looking guy (that I will probably never see again).
Not sure what to think about everything that just happened, but I'm extremely exhausted and hoping I have some chance of actually sleeping soon with my parents in my house. In the past once I hit 40 hours I start hallucinating, so hopefully I'll be asleep soon!
Tuesday, November 22, 2011
I'm sorry to post this blog, because I know my sparkfriends will be very worried. Hopefully i'll be able to update quickly.
For years, especially in the last year and a half (since I was diagnosed with gastroparesis) I get coughing fits that after several violent coughs I start throwing up. This happened earlier tonight, but since I've had mostly liquids today, there was nothing for me to throw up - so I just kept coughing and coughing. After well over a minute of straight coughing, the tinnitis (ringing in the ears) hit hard and I knew I was about to black out. I tried to take a few steps so I would land on the soft carpeting instead of the hard lamenate in my kitchen. I didn't make it. My knees hit the lamenate hard and my arms just barely slowed my fall as my face just made it onto the carpeting. I didn't lose consiousness this time, but it hurt.
This has happened several times in the last few weeks, so I just blew it off. but then I started getting chest pains, followed by continual weakness in my legs and arms. My chest feels like it's being squeezed and my head feels like the pressure will pop it like a bubble. I tried a shower (if my lungs are the problem, warm moist air should help) but it didn't. I am constantly at risk for hyperventillating because for some reason my carbon dioxide levels are always low (hyperventillating is too much oxygen and not enough carbon dioxide in the blood, which is why you breathe into a bag) so I tried holding my breath - that made it worse. If you're having a heart attack, coughing hard is like mini chest compressions so it can help your heart work until help arrives - so I tried coughing hard a couple times, but it made the chest pain MUCH MUCH worse. I've been on the couch about an hour and things just keep getting worse, including my lips tingling, I can't catch my breath, and when I tried to take my pulse, I found the corotid artery on the right side of my neck is pulsing at about half the strength of the left side.
I'm terrifed because I haven't had chest pain like this before. I've had GERD for half my life, I've had eosinophilic esophagitis, I've had bronchitis, I've had asthma, and I've had a cracked rib, but nothing like this! But I'm also terrified because of my track record with doctors refusing to listen and help me. So I called the friend at work who has been trying to look out for me. He lost someone to anorexia, so he knows what goes wrong when the body is underweight and malnourished, thus I wanted to run this past him. He offered to come over and take me to the ER (because I really don't want to pay for an ambulance AND an ER visit, but when I can barely stand without my legs giving out, driving even 10 minutes isn't a good idea). He just got here.
I'll update as soon as I can.
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