more tests

My transplant surgeon ordered a series of tests in order to dx whatever is going on with me that isn't right....so here we go. I have one on Friday. the rest are yet to be scheduled....stay tuned..

doctors and tests

I feel the need to "put pen to paper". UGH! It was a bad day. I decided the only meds I was taking today was my Lyrica. Wrong answer. I hate living on drugs . I just want to be normal. I know, you can't put a body through what my body has been through, but Lord, please, something closer to normal. I am so exhausted. I can't eat. I eat 600 calories a day. I feel pretty good when I take my meds, except for the side effects, it's a trade off, like everything else. I am booking my trip to Minneapolis tomarrow. My team up there REALLY wants me to have this test on Friday. I will do it. I don't want to. It is my body, but honestly, I need to do my part to get to a better place. I am on way to much meds. I hate the meds. Life with no meds sucks even worse. I couldn't function very well without them. I am trying so hard to be normal and do the right thing. Right now, I just want someone to tell me what that is. I need my husband here with me really badly right now. I don't think I have ever needed him so badly as I do right now. I am so very tired of fighting. Will it be this way the rest of my life? And how long is "the rest of my life" anyway? I know no one knows for sure. I know that, and I know in my head, I have the best care possible and my prognosis is "guarded". I get that. Don't get me wrong. I am SOOO thankful I am alive. I am so greatful I have insurance. I am so greatful, I have a few really great great awesome friends. I am so thankful I have good teams of doctors who are relaly putting their heart and soul into me. They have not written me off. As long as they keep trying, I will keep trying. Today, Igave one of my docs in Minneapolis my word on that. I am coming up on 4 years from my whipple, 2 year transplant, and one year pacer. I got this thing licked. (It sounds good to say that). One day at a time. Slow and steady wins the race. I had a dear sweet soldier friend of mine who told me that once long ago. His high school teacher used to tell him "slow and steady wins the race". (insert deep yoga breathe here)

I hate when I hit these walls. I do from time to time. I have to retreat, huddle up, regroup and get back in the game, and not just to player, to win. To score.

I have this totally awesome freind "g" I will call her. We had our transplant together. I swear, she is the only one who gets me when I get like this. I just need to focus and get this time in my life behind me right now. Why couldn't I have something easy? I know, It wouldn't make as strong.... :)

I delayed my next test

My next test is on Friday with an upper GI with air and barium. Ok, so the doc ordered that, but since my whipple, I have never been able to drink barium. I have this area where there is a...crevis..we will call it. Food gets stuck, little little food like rice. Barium can get stuck there and turn to rock, or so I have been told...I always drink the gatricograh, I think it's called? I can say it, but I can't spell it. My dyslexia can be quite challenging at times.

I am glad the barium enema is over. I hate those. i have endured several of those in my lifetime. You would think with technology as it, they would come up with something easier, or at least give you SOME versed! Geez! As if we don't test my resilancy enough!

I'm going back to MSP in Oct for my 2 year transplant check up already. I am REALLY looking forward to going. Though the tests are grewling, it's 2 full days, it's the only place I ever feel perfectly normal. Its the place that gave me life. Plus I just love the town and the university. It's very artistic and very diverse. Lots of good food, and cheap food. The hospital makes "Texas Chili". It really is Texas chili. You would not think that in MN, but it's fabulous. There is also a little asian place I love to go and there is an Applebees that makes this salad, that I love. I only eat it when I am there and I eat it on the patio. I should have my flight and stuff locked in on Monday. I am soooo looking forward to going. Especially in Oct. The air is crisp, but not too much. It's nice. There is a coffee shop that's out of this world on the corner by the clock tower. It's called Espresso Expose'. It's worth the trip up there just for the coffee. I like to sit on the wide benches they have and watch the students scurry. I always buy a med student or a doc a cup of coffee. Just a random act of kindness. I feel like I am giving back and appriciating them in some small way.

I had my barium enema today

I feel like kah kah. Last night I got 1/2 ish of the magnesia citrate down, barfed the rest up, called the doc, took 4 ducolax, still nothing, called the doc, he told me use this other stuff, got 1/2 of it down, still nothing. Blood suagr went to 225, I was so done it wasn't even funny. By morning, my bowels moved a bit. Not much. What the hay?? I think I got most of the baruim out - ish. They want to run more tests. I am so done. So done with doctors, so done with tests, so done with surgeries, I am just done. I wish so badly I could talk to my husband or get word from him...even a smoke signal would do. This really blows. My sister went with me this morning. After the procedure we went to Dennys for an omlet. It was the best omlet. We did after my transplant too. Met at Dennys for an omlet. Last night I was suposed to be on clear liquids, technically all day, I was hungry. I cheated and ate a muffin and late last night, well, there is a mcdonalds right by the pharmacy and I was craving fries like nobody's business. Of course I had some. I am somewhat rebelious. You see, I have been down this road for a long time. I have fought these battles my whole life. I know what my body can and can not take. I knew I could handle the fries and technically, it is a "soft food". It's all in how you look at it. I lost almost 20 pounds. I have been eating about 600 calories a day. I feel TONS better since I quit eating so much. Less nausea, bowels are better, blood sugar is better. I guess that idiot doctor I met 6 years ago inthe ER was right when he said if I never ate or drank anything the rest of my life I would be fine, and yeah, I reported him and he is no longer employed at that particular institution. Butthead.

To Jim

You have abviously been through some crap in your life and faced medical trials and tribulations. I think that, unless people have walked in our shoes, they don't get it. I also know, when there was a time I was so gravely ill, I did anything my docs asked me to do, not knowing any bettter. I have regretting some of the "treatment" I agreed to do. Had I had the knowledge I do now...hindsight is 20/20. That is why I write this blog. In hopes that is just one person actually reads, perhaps, they will make more well informed decisions on their healthcare. Best of luck to you Sir.

Dear Jim

Thank you for your email. You're too funny! It's not about being popular with the docs. I don't know if you are familiar with the book entitled "How Doctors Think". I have the audio book, so I can't give you a page number referance. In the book it tells a tale of a doctor who liked his patient. Because the doc liked his patient, the patient protested a certain exam. The doc complied with the patients requests because he liked the patient. The patient later died. Had the patient complied and let the doc exam him, he most likely would be alive today. Having said that, I'm not sure you want your docs to like you. I think you have to be extremely intune with your body very intimately. You have to separate yourself and look at thinks from your docs perspective and as a business decision.

Allow me to share with you a personal story. One time, several years ago, I had a whipple. I asked for nausea meds. The nurse said I was adicted to the drug. I said fine, forget, don't give it to me. I protested like you would not believe. A few moments later, I barfed up blood. I have blood coming out of every possible orfice of my body. I don't mean a little blood, I mean, it looked like a clip from Rosemary's Baby or the Exorcist. after that, I never had a problem getting nausea meds, but if I would have not protested, I most likely would have not barfed the blood, therefore, they would not have found the bleed and I would be dead.

I think it's a fine line. I also believe it is the "practice of medicine" and I emphasize "PRACTICE". No 2 bodies are like. No two people respond the same. I refuse to take part in cookie cutter medicine.

I don't think it's a bad think that you are not a model patient. I question anyone who allows doctors free rein over their body.

Take good care, and thank you agian for writing!

neuropathy

last night I woke up in the middle of the night to horrid neuropathy pain. It was the first episode in a while where it has woken me. I am even on Lyrca, 2x day. Lyrica is good stuff. So it nuerotin. They work differently, It's unfair to compare them. Overall my bowel seems much better today. I had a rough go of it this morning, but all in all, it was a better day pain wise. Not looking forward to my procedure, not dreading it either. I have learned over the course of many years to roll with it. i am not the most model patient, I know my body better than a doc knows my body. I live in it. The choices are mine, not a docs.

I read "Complications" by Atul Gawande and "The soul of medicine" by Sherwin Nuland. Angels in the ER is also a very good read. I learn a lot from reading. It helps me to understand things from a docs perspective so I can communicate with them more effectively. They say I am a complex case and not easy to treat. To me, I think I have a few issues, for sure, but as normal as I can be. The thing is, I look "normal" so no one knows unless I tell them. I had a CT the other day and an healthy "oh shit" was heard from the tech. I get they don't see people like me every day, I guess it adds flavor to their otherwise mundane night.

i once read a book written by an ER doc. He says he loves ER because you never know what might walk in the door. Things are not the way they appear, yet, sometimes they are exactly that. Medincine and technology facinate me. The human bodt is amazing. the slightest thing can kill you and yet one can die for no apparent reason other than it was just your time. And then there are people like me. who live a full life, and they can't find a reason why. I always say the human spirit and soul is a very strong thing. Never to be underestimated. I think your brain is that way too. I think the way you think directly effects your quality of life.

There is no charge for this consult

my Colon

Under the advise of my doc, and against my better judgement, I went to the ER the other day. The doc was pretty cool. He offered drugs, I declined. I heard him talking to the nurses saying I know she has abdominal pain, but she has no abdomin. Well, I still have some bowel. My pain is coming from my bowel. He offered to relieve my pain and keep me over night. I declined on both counts. a very story short, I left the ER in tears. I emailed Dr sutherland's office out of dispair. He believes I have relucant colon. I caled my girlfriend who had her transplant at the same time as me, I knew she had to go back and get part of her colon removed. We have the same symptoms and also, she said, 10% of the people who have the transplant, get relucant colon. so here I am. I am going back in on Wed for an upper GI and barium enema. Those are never fun, epsecially after a whipple. You can only imagine...well, trust me, you can't imagine unless you have actually personally been through it. The prep will be tricky in regard to blood sugar management. I don't see this going well. I told them to have a bad of D50 on standby. Of course they will not. I will have to tell them agian.