Today's update

I met with the transplant surgeon today to discuss a gastric pacemaker. I took notes so I'm going to just copy those. More train of thought than cohesive story, but you'll live. :-)

He said that the pacer won't improve my gastric emptying. It usually helps people with intractable vomiting but thats about it. He thinks I'm a high risk patient for the surgery and that the possible benefits are far outweighed by the risk of coplications. I guess because I've had previous abdominal surgery. I've already had a mini trial as to the success when I was on the domperidone. That helped with my gastric emptying but not the nausea and vomiting. The pacer would do the same thing as the domperidone - make my stomach move - and since the med didnt really help, he doesn't think the pacer would. He said that he is a very conservative surgeon and that he was sure I could find someone to give me a pacer, but his opinion is that I wouldn't benefit from it. I told him my goal was not to get a pacer but to find a solution and/or options to make me feel better. If a pacer isn't the answer, I'm not going to go running around to find someone who will tell me what I want to hear.

He did say that he thinks the gastroparesis is a red herring and he believes that my nausea is probably caused by something else. He just doesn't know what.

He was very impressed that I was looking at every option possible and was proud that I have taken the initiative to control my own medical care. If he only knew, eh?

He did give me the name of someone in Louisville who basically  invented the pacer surgery. This dr is now doing a noninvasive temporary pacer that he places endoscopically. If patients respond to that, it's likely that they would benefit from the permanent pacer. It's pretty low risk, so I'll probably investigate that path. It might be worth trying.

That's all for now. I'll post an update once I see the pain guys on Wed.

Where's the sun?

I am here in MN. It is cold.

I am seeing a transplant surgeon this afternoon to discuss a gastric pacemaker. Then on Wed I am seeing 2 doctors at the pain clinic. I'm really hoping that I can get some answers, or at least some new options to try to manage my pain, nausea and GI issues. I will update everyone at the end of the week. Keep praying!

Brrr!

I am going to MN on Sunday (12/15). It is -2 there right now. There are not enough layers in my giant wardrobe to protect against that.

I am seeing one of the transplant surgeons to discuss a cardiac pacer, but I don't think I'll end up going that route. We'll see. I'm also seeing the pain team there. They're good folks, so I hope they can do something. I'm pretty discouraged, though. I've come to realize there is nothing that can physically be done for me, so it's all up to my mental control. I'm not strong enough yet to overcome the (perceived) pain. Whether it's real or all in my head, it still hurts a lot. And I still have horrid nausea. Maybe the snow will freeze the puke out of me!

I have had my fill of tests. I had a gastric emptying study, which showed delayed emptying,  so they ordered an upper GI barium series to look for blockages. That showed a mass, so the dr ordered a CT scan to look into that. The mass was gone on the CT, but they found some irregularities on my liver, so ordered an ultrasound. That test just came back to say that they saw a growth on my liver, so now they want an MRI. Yeah, are you as dizzy as I am? I'm sure the liver stuff is due to my islet transplant, but my local doctors want to get an MRI so I'll indulge them a bit since they're also trying to figure out what's wrong with me.

And that's about it. I still feel lousy but trying to fake it since it's all in my head anyway. Now I just get to fake it in -2 weather. Brrr!

My chain hang low

I still have nothing of consequence to report, though I did have some interesting images. Last week I had a barium swallow test to look for any obstructions or strictures in my bowels. Nothing showed up. They also took an xray, which showed a couple of interesting things. First, there is a mass in my abdomen (where the green arrow is). The radiologist doesn't know what it is, but was "guessing" food or medication. My primary doc doesn't like that answer, so she ordered a CT scan. (God bless her - I just threw all this at her today and she wasted no time trying to help me out.) There is also something that looks like a chain (see red arrow) when you zoom in (seen in the other image). All weekend I was positive that someone dropped their necklace in me when I had my TP-IAT. I went down to the hospital to talk to the radiologist today. Ends up that it IS a chain, but is there on purpose. It is called an anastomosis chain and it is linking loops of my bowel together. The radiologist said that it would not cause any pain, though I'm yet to be convinced since these 2 things are exactly where my pain is.

So, that's about it. I'm still waiting to hear from MN as to what their plan is. I was really hoping to get out there this year, but that's looking less likely every day. I still need everyone's thoughts and prayers, please. I'm still in a lot of pain and continue to get more discouraged every day. Please, God, let someone figure SOMETHING out!

My xray machine has a cupholder!

I'm sitting in the hospital having an upper GI and small bowel study. Nothing exciting, just drinking some barium. But...on the pre-exam xray, the radiologist saw an odd little blob right where my pain is. He had no idea what it was. After I drank the barium, you couldn't see it anymore. I don't know what that means - that it was just an artifact or that the barium blocked it out. I so hope it's real. I know that sounds awful, but having something to explain all this pain would mean I can do something about it! (And I'm not just a drug-seeking hypochondriac...) At the end of the test, he said the blob got smaller so was probably something more like food rather than a cyst or stone. He saw no obstructions or strictures or anything, so it sounds like another waste of time with no answers...   :-(

Otherwise, there's not a whole lot to report. Frankly, I feel like shit. I'm trying my very best to start living a semi-normal life and just accept that this is how I'm going to be. Most of it is mental anyway, I'm sure. I'm not going to give up looking for answers and relief, and I still really need all your prayers from that. It's so hard to stay positive when there's no end in sight.

Dr. Dunn has been amazing. She's been talking to my local docs, reviewing test results, and consulting with her colleagues to come up with a plan of action for me. I really need a hero right now and she's doing that. Louise has been just as wonderful - hammering down on doctors for charts and answers. I just wish it could all be faster!

Gastric emptying study

Thursday I had my gastric emptying study. From the looks of it, nothing is moving (still). You can see a pretty big hiatal hernia, though. I was diagnosed with a small one during my last endoscopy, but my GI didn't want to do anything about it at the time. I'm not sure if it's grown since my endoscopy or not. Maybe it will be worth fixing during surgery in MN, if that ever happens. Dr. Dunn is preparing for a conference that she's hosting this weekend, so hasn't had time to get back to me yet. Hopefully next week. Now that I've decided what I want to do, I want it done now! (I'm so patient...)

Otherwise, things are still about the same. I've had a lot of pain this week and have only made it out of the house for appointments. I wake up several times a night, so I'm tired all the time. I'm trying to keep a positive attitude so I dont start spiraling downwards again, but it's tough sometimes. The waiting game is one of the hardest parts - not knowing the answer and not knowing WHEN my drs are going to give me their recommendations (other than to take more meds). So, keep up the prayers - I need them!

Back in bed

Well, I'm back in bed again. :-(  The pain I've had on my left side has continued to get worse and worse, and I haven't been able to get out of bed or do much of anything except lay with my heating pad. It totally sucks. Last night I woke myself up gasping and crying in pain. I've decided I just want to pull out the big guns and go for the surgery. I'll have it done in MN - a GI will put in a gastric pacemaker and Dr. Dunn will remove scar tissue (and probably fix a couple hernias). I know the scar tissue can, and probably will, come back, but I have to try something different.

I've contacted Dr. Dunn to see when she can get me in, but I haven't heard back yet. I'm going for another gastric emptying study tomorrow, which should clinch the need for a pacemaker. I'm also going to see the pain dr here in Tucson next week. This is absolutely a last resort, as those close to me know. I'm hoping that he can maybe do something like an epidural or spinal block or something to get me through until I get a surgery date. Dr. Dunn and I talked about this surgery when I saw her in August - I'm just praying that she agrees with this plan and can get me in quickly. Keep your fingers crossed for me!

Chewing the fat

I saw my local GI last week. The last time I saw him, he wanted me to increase my meds that make my stomach move. It was supposed to help with my nausea,  but made it much worse. I got to the point where I couldn't even lift my head without vomiting, so I backed off of that. I'm still nauseous every day, but I'm not puking my guts out anymore. My dr was baffled by the increased nausea (whaddaya know....). Maybe I should start taking syrup of ipecac. Isn't that supposed to make you puke? It would probably make me feel better.

The latest plan going forward is for me to go on an extremely low fat diet and call him in a few weeks to see if I feel any better. If not, he's going to proceed with the gastric emptying study to see how long it takes to digest my food. I've kind of started on the new diet, though I haven't been great at sticking to it yet. I've missed red meat too much from before my surgery to give it up now. Ok, not smart, I know. I'm trying to find a balance.

So, that's about it for the current plan. I don't find myself feeling a lot better when I do stick to the diet, but it's probably about consistency. My diarrhea is as bad as ever and he didn't have any great suggestions for that except to try a different med. I don't want any more meds!!! My pain is still there and flares up pretty bad at times, too. It's all so frustrating...

Update from MN trip

Well, I am back from MN. I swear, every time I go out there, I feel better, with renewed hope.

My first day was full of testing for the study I was part of. They took 120 vials of blood that day - totally crazy! Fortunately, they place IVs in my arms so it's only 1 poke to get all that blood. Tuesday morning was more testing. The results were basically that my blood sugars are very well controlled and I have no need for any kind of insulin or meds to control my blood sugar. There is always a chance (and actually a likelihood) that I will one day have to go back on insulin, but I am controlling my blood sugars so well that it won't be anytime soon. Yay!

I saw Dr. Dunn on Tuesday afternoon. She is pleased with my progress, though she acknowledges the major issues that I'm still dealing with. Based on my abdominal pain and completely paralyzed stomach, she believes that I have adhesions that are sticking my stomach to the abdominal wall. My local GI is having me increase the medicine that's supposed to make my stomach move (which has made me incredibly nauseous), and is going to re-test the time it takes my stomach to digest food. If that number is still really slow (last time was 5 1/2 hours to digest half of a hard boiled egg), then surgery may be helpful at that time. Dr. Dunn would go in and remove the adhesions and also have a gastric pacemaker installed. It's the same device as a cardiac pacemaker - they just set it to 5 beats per minute instead of 60. I'm not crazy about another surgery, but I would rather fix the cause of the problem than treat the symptoms with massive amounts of medicines. At this point, I have to take 16 pills of this one medication every day, in addition to all the other meds I'm taking. I'll deal with that when it's time - God will lead me to the right answer.

That's about it. We've settled back into a routine in Tucson and I'm trying to increase my activity without doing too much.  My goal is to do one thing each day (like run an errand) which gets me out of the house, but doesn't leave me bedridden the next day. The kids are back in school now, which forces me to attempt to parent at least a little bit. I figure the wolves that have been raising them thus far have done a pretty good job, so I can still leave most of it to them.  :-)

Im attaching photos of me with Peggy, the research coordinator (in the scrubs), Dr. Bellin, the endocrinologist (with the figure I'd die for), and Dr. Dunn, one of my most favorite people in the whole world. I'm sad that that photo ended up blurry, but I still love her, blurry or not!

More non-news

Well, since I've been back in Phoenix, I've been to the eye dr (I need glasses), to the dentist (I need 2 root canals, among other things), my primary dr (who told me I need a Psychiatrist, but doesn't know any names) and my GI. Twice. (Who told me to just double all my GI meds.) Oh, and he has never seen anyone with gastroparesis as bad as mine, ever. And he's 83.

So, once again, no news is no news. Nothing has changed, except I'm throwing up more. My GI told me that there's a study in Kansas that implants a pacemaker  in the stomach to make it beat 5 times/minute. My problem is that my stomach is completely paralyzed, but my intestines move food through me faster than a bullet. (Just guessing....a bullet is one of the only things that HASN'T been inside my GI tract, I think!) Also, I'll be in MN this Sun-Tues for routine testing, but I'll ask Dr. Dunn what she thinks about that pacemaker. At this point, we're going to try doubling my meds for a month and then testing my gastric emptying while I'm on that (very expensive, of course) med. If we can improve the number with more drugs, that will mean great news to him. I'll keep you posted...

Oh, as an aside, I do, indeed, have trigeminal neuralgia. However, according to my neurologist, it's very easy to control. He gave me a 2 week supply of meds (God bless the meds) that took all the symptoms away. Yay! I haven't had any new incidents since. He ordered an MRI to check that there's nothing in there pushing on the nerve, but I think the brain scan will come up with absolutely zero findings. That will explain a lot.  

I need a straightjacket

So, it just never ends. I've been getting this horrible pain in my face that is pretty close to being up there with pancreatitis. Seems silly, but it is just excruciating. I, of course, have self-diagnosed and think it's something called trigeminal neuralgia (TN). http://en.m.wikipedia.org/wiki/Trigeminal_neuralgia (Hey, I self diagnosed my pancreatitis, so I'm not all that bad with this sort of thing.) Anyway, they have nicknamed it the "suicide disease" because of the pain. Of course, it's not easily controlled and your two options are more drugs (just what I need) or brain surgery. Fantastic, right? And there's no way to clinically diagnose it. I'm going to the neurologist on the 29th, so won't know anything until then, but the description matches my symptoms exactly. The odd thing is that one of the drugs they use to treat it is a med that I'm weaning off of. Seems awfully coincidental, don't you think? It's still odd, though, because TN is caused by a blood vessel laying on the trigeminal nerve, so it's a physical thing. Who knows, maybe I've had it for a while, but the med I was on just masked it. That seems to make more sense. I swear, if I didn't refuse to go to the ER at all costs, I sound like a perfect example of Munchausen Syndrome! Whine whine whine, I know. I think it's about time to just check me in to the looney bin. There must be people there who are crazier than I am, right? Right? Sigh...

Update from last week's EGD

Hello everyone.  I just have a quick update with some (mildly) interesting  news. I had an EGD (endoscopy) last week due to difficulty and pain with swallowing. My Tucson GI said that I had a hiatal hernia, a lot of red/swollen tissue, and a flattened pylorus (the tube that leads out of your stomach). I have no idea how or if any of that is related to my pain, or what they do to take care of those things. He said he also witnessed severe gastroparesis. That one was a little troubling because the theory was that my gastroparesis was due to the large amount of narcotics in my system, and would go away once I'm off the narcotics. Well, guess what...not happening. I have to make a follow up appt with my GI to discuss the results and the path forward from here, but at least he saw a little something that may be treatable. It's odd that the scope I had about 6 weeks ago didnt show any of that, so is it all new and developing, or did my other doctor miss it? Either way, I'm just hoping he can provide some solutions. I'm kind of frustrated because everyone blamed the narcotics on everything, but now a year and significantly fewer chemicals later, I still have the same symptoms as before-abdominal pain, constant diarrhea, inability to speak coherently, or even form original thoughts. No improvement other than my head is clearer, which makes things worse because now I'm aware of how truly braindead I really am. I still have to make a follow up appointment with  my local doctor, so I'll update everyone once I have a path forward. He's also going to investigate solutions for my other GI issues as well. I'll keep you all apprised! C ya!

2 wonderful people in my life

I just have to give props to my pain doctor – Dr. Marcia Mastrin in Phoenix. There are very few doctors out there who are willing to manage pain control and narcotics, and I've had some very bad luck with other doctors in the area. Dr. Mastrin worked out a very sensible plan to wean me off of my narcotics.  I'm happy to say that I'm completely off of the Fentanyl. (Whoop whoop!) Even better, she gave me some other meds to help with the side effects and, other than a couple of achy days, I really haven't had too many withdrawal symptoms. I've heard such horrible horror stories of how this goes, but thus far I've been pretty comfortable.

I also must give a shout out to Debbie Vendt at Angel Wings Wellness Center. I have had several Reiki sessions with her and she is just amazing. Whether it's pain, depression, stress, or anything else going on in your life, I've just been amazed at how well Reiki works. It's considered alternative, of course, but all they do is have you lay on a bed and lightly touch certain parts of your body. I had it done for the first time when I was in the hospital in MN and it was the only time during that hospital stay that I was completely relaxed and out of pain. Now that I'm doing it in Phoenix, I think that it has helped me tremendously with withdrawal symptoms, pain management, and just a better outlook on life. (I've really struggled with understanding my purpose in life now that I'm not working, and this has given me a lot of clarity and eased my anxiety about it all.)

Anyway, I just wanted to send out some thanks to these 2 amazing people. If you live in the Phoenix area, these are the folks to see. And if you don't – you should definitely seek out Reiki as part of your healing.  I wish I had tried it a year ago when my health first started going downhill! I've learned that recovery from major surgery (or any other traumatic event) takes much more than just medicine. It is impossible to heal just the physical scars when there's so much more to the trauma. It's taken me a while to realize this – too long – so I hope others can take my word and at least give Reiki (or other methods) a try.

Nothin'

They found nothing today. Everything looked completely normal on both ends. I guess I am just a hypochondriac and/or a freak of nature.

On a bittersweet note, I found out today that my Social Security Disability has been approved for life. I want to do everything in my power to be able to go back to work one day, but it is a bit liberating to know I don't HAVE to.  :-)

Need extra prayers tomorrow

Tomorrow I'm having an endoscopy (top end) and a sigmoidoscopy (bottom end) by a Mayo doctor that I really like and respect. I'm having trouble swallowing food, so he's going to look to see why. "Take a look at your swallowing tube," as he would say. Then he's going to go in the other end and take some samples to try and figure out why I've had diarrhea for a year now. I've done everything they've told me to do, but it will not let up. So, I'm just asking for some extra prayers that he finds something that will point toward treatment and a cure. I'll post an update once I'm out. Thanks - love you all!

A big thanks!

Hello ladies and gents. Not much exciting news to report, but I thought I'd at least say hi. So, hi!

I got a call from MetLife the other day. They're currently paying my disability until (or if) my social security disability is approved. Their first phase is "can she do her job" and that answer was approved as  no. The next phase is if I can work ANY job, utilizing my education, etc. The "no" to that was also approved. So now, they just need to check in with me on a yearly basis. I don't know if that's good news or bad news, but it is what it is. Now I'm just waiting on what the social security guys have to say about it.

Please keep praying that I continue to heal and one day become a contributing member of society. I know those prayers are there. Others have mentioned that they can tell that I have thousands of people praying over me, so please everyone, keep it up. You are all so special and valued by me - I don't even want to think where I would be now if it weren't for all of your prayers. So...thank you, thank you, thank you!

Cranky update

Well, I guess it's time to update again. Let me just say that weaning off fentanyl is a bitch. There's no other way to put it. As my pain doctor said, "It's like every little ache and pain you've ever had is multiplied by 10." My whole body aches, like the worst flu you've ever had. Muscles, bones, organs, everything. Then there's the headaches, diarrhea, nausea and projectile vomiting a la The Exorcist. And forget trying to stay awake for more than an hour at a time during the day, or sleep more than an hour straight at night. Not fun. At all. I've been doing this since October and yes, it takes that
long!  On the bright side, I should be off of all narcotics within a few months and back on my way to my old, cheery self. Or, my old self, at least...  ;-)

I had a great conversation with my pain doc the other day. She said the grumpiness is to be expected (then apologized to my mother, lol) and the aches and pains and stomach issues are part of the process. Because fentanyl has such a long half life, I will continue to feel this way for about 3 months after I'm completely off of it. And it will be 4-6 months before I get my brain back. I miss that brain and hate this shriveled up raisin I've had to work with in the meantime. My doctor kept relating this to heroin withdrawals. I asked her if I should just start using heroin, but then I realized I have no veins so that would never work out. :-)

There were good things to hear, too. In my hastiness to get off meds, I had stopped taking some of the meds that will help with my withdrawal symptoms, or I took them irregularly at best. So, I set up a system to take them at regular times and I must say I've been feeling a bit better the last couple of days. I've had more energy and don't feel like I've been run over by a mack truck, more just like a medium-sized sedan. Plus, she gave me a cream to try on my left side where that horrible sore spot is. Whatever it is, it causes excruciating pain if I cough, sneeze or yawn, and moderate pain just breathing sometimes.  I'm happy to say that the cream is a tremendous help - yay! I can actually breathe without pain again! This is a big deal to me!

Well, that's all I've got. Enough already, eh? Remember to hug your loved ones! :-)

The beautiful Cami is 12 years old!

She's on the far left in the black tank top

Cami's boyfriend CJ

I thought everyone would like to see - I sure did!  :-)

It's not easy being round...

I need to clarify my steak post...I have NOT gained that much weight - I just get the big belly at times after I eat, then it goes back down to my normal svelte manatee silhouette!

Exciting news - boy or girl?

So, which is it? You won't believe this! Twins!!!
Well, that or a steak. Sorry, nothing more exciting than just a side effect of that pesky little act we call eating. I thought this part was over after the surgery, but alas... At least it was a good steak!
Not much new here. Guess I need to make another GI appt. I'm on a new enzyme and also a new med that makes my stomach move. It seems to be helping my nausea but a side effect is that it makes you lactate. If it's not one thing... Though I should mention that I've been able to drop a couple of meds due to the success of the above mentioned ones, I'm slowly but surely weaning off the narcotics (I'm now at a third of the dosage I was on 6 months ago), and I've only had to take about 2 units of insulin since last August. Me, the one with the lousy islet yield, with a 7% chance of ever getting off of insulin. And look at me now - no insulin, no diabetes-related pills or meds at all. Now THAT is truly a miracle and I KNOW it's because of everyone's prayers! I just have to remind myself of the progress I've made sometimes when recovery feels sooo slllloooooowwwww. I am insulin-independent! I may not always be, but I am today!
The kids are doing really well here. Cami turns 12 next week, God help us all. She has turned into a very pleasant, delightful young lady who I love to be around (though I don't think Kyle would agree).  :-)  She is in gymnastics and cheer, but mostly likes to hang out with her friends at the park. She got straight A's this quarter, for the first time since 2nd grade so we're very proud of her. And Kyle, too! He got all A's and one B, so he also inherited his mom's super smart-dom. ;-)  (Hopefully theirs sticks around - mine is long gone! I think astrophysics is no longer in my future...) Kyle is super funny, with a quick wit and it very talented at sports. He's playing baseball up here in Phoenix and then will pick back up on the karate when he returns to Tucson. And he's quickly approaching 11. Man oh man! But forget the kids, how did IIIII get so darn old?!?!
As Cami said before, please keep our family in your prayers. In addition to many family members with health conditions, my 9 year old cousin Skylar passed away last week. It was sudden and unexpected and the family is still trying to get over the shock of it all. She lived her life to the fullest each and every day, and touched so many people, she serves as a reminder to us just how precious life is. So hug your kids, or your mom, or even your icky brother - just don't take for granted that today you can tell them you love them!

Update on mom

Hi everyone! This is Cami. My mom is too lazy to update so I am doing it for her. Anyways, my mom just got back from Minnesota a couple weeks ago. They gave her a couple new medications to try out. Its been helping with the nausea and GI problems but has not completely solved it. She still has some pain too. We are in tucson right now visiting Lew and other family and she's doing pretty good with it. I'm sure if we were in phoenix though, it would be easier. But then again, there's no place like home. She didn't do very well with the car ride. Hopefully she'll do better on the way back to Phoenix. There's nothing else really new with my mom or any of us.

Just a special thank you to everyone who has helped my mom recover. All of her doctors, especially Dr. Dunn, who saved her life, Lew, Susan (mom or Bama), Art, Erin, Mike, Lisa and Bill. And everyone else who I didn't mention. Even sending her flowers helps so thank you. Without you guys my mom would not recover half as fast. And I'm asking for you all to pray for my mom to gain her health back, and to be able to cut down on the meds, and not have to take insulin anymore. Also please pray for my Great- Grandpa Jim. He has become very sick this past year and my mom and all of us are very worried about him.

That's it for now but I'll try to keep you all posted if my mom can't post. And she knows its almost been a month but I'll keep bugging her.

From,

Cami :)

Tuesday update

Well, we had a crazy busy day today, but got a lot done. I had a bunch of tests (see yesterday's post) and met with 2 doctors. The first Dr I met with was the psychologist who works with pain management and the pancreas team. Today was really an assessment, where he realized that basically, I'm bat shit crazy, lol! He and the pain doc are working together to develop a plan that includes weaning off the narcotics, learning how to control my pain, and shift my way of thinking that I have no self worth while I'm unable to do anything that contributes to society. I also saw Dr Dunn today. I told her that I highly recommend they have all of their patients meet with these guys before they go home. I have seen many post-op patients who have lots of troubles around the 6 month timeline. She wants to talk to the whole team tomorrow, but it sounds like we're not going to do surgery at this point anyway. I was lukewarm on the idea - I'm not too excited about having ANOTHER surgery, but I was kind of hoping for a quick fix. Dr Dunn thinks that my massive amount of scar tissue is definitely contributing to my pain, but removing that scar tissue can cause pretty severe complications if the bowels are perforated or kinked in any way. So, I think we're going to sit tight for another 3 months or so and see if my pain improves using these other techniques first. And I'm OK with that. Tomorrow and Thursday I have tests for the study drug that take 3-5 hours each day. Friday I meet with the pain doc again. I think we'll be here for about 2 - 2.5 weeks depending on when the psych and pain guy can fit me in. By the way, it got up to 4° today. Tomorrow is supposed to be much warmer. 22°. And snowing. Plus the wind was literally picking up people a la Wizard of Oz. Much fun. How do people DO this every day? Brrr!

Balmy weather

OMG. Tomorrow it is supposed to be -35 outside. Yes, thirty five degrees below zero. How is this even compatible with life?!

Update from MN

Hello everyone,

Well, I am in Minnesota again, for both my 1 year post-op visit and also to meet a whole gaggle of doctors who will try to figure out why I'm still so jacked up.

I saw the pain management doctor first today. He said that I am extremely sensitive to pain and looked at it from a physiological/psychological perspective. He believes I'm trying to focus on my end goal (returning to my previous lifestyle, working, etc) instead of healing what's ailing me in the moment. This is true - I am always looking for the time when I will live a normal life. (As normal as possible, anyway...)  I think a lot of it is learning how to practice mind over matter. He has a program where he works with the psychologist- they see the patient about 3 times each over a couple weeks, then send you back home to practice it for 3 months, then come back for some final sessions. He believes I suffer from PTSD stemming from the surgery. Since I define myself as valuable by the ability to work and take care of my family, I have a tough time when I'm unable to do those thing. Personally, I think the PTSD label tends to be a bit over used, but I guess the surgery could be identified as a traumatic event. Either way, I'm willing to try new things!

Then I saw the GI. He is definitely interested, but quite baffled by me. He ordered some tests, and wants to talk to the team at their group meeting Wed night. Then Dr Freeman came in. He's the one who finally diagnosed all my pancreas issues. I just love the guy. I even gave him a big hug, and for those who know me, you know how much I hug!  ;-) He suggested changing out my pancreatic enzymes;  I will be on those for the rest of my life, though I had to take them prior to my panky-yanky so that's no big deal.

So, tomorrow (Tues), I have an appt with the psychologist, Dr Dunn (my pancreas surgeon), bloodwork, an EKG, a CT and a Dexa scan (measures the calcium in your bones).  Then Wed and Thurs I spend the day doing tests from the study drug. Friday I meet with the pain dr again. It sounds like I will be here about 2-3 weeks, as long as I don't need surgery.  Î should know much more by tomorrow, so I'll do my best to update y'all as soon as possible!

Hello all. It's been forever, I know. I wish I could say it's because I've been out having so much fun that time just flew by, but alas...not yet. I have really had a hard time finding good local doctors who are familiar with my condition, so when my health started to degrade about 6 or 7 months ago, problems just stacked up on themselves and I became one big medical mess. I still have abdominal pain, severe GI problems that have spanned both sides of the spectrum, and multiple other issues that come and go. I'm still unable to work, or even care for myself during the day. So, back in November, I moved up to Chandler (about a 2 hour drive) to live with my mom. I came home for a couple weeks around Christmas (which was wonderful), but knew that I needed full time help to take care of myself and the kids. So now the 3 of us are here living with my mom and stepdad for the rest of the school year. (Lew and I are still great - he just has to stay where there's a paycheck for now.) The kids are doing amazingly well with the transition, diving right in to both school and social activities. All my siblings live in the area, so now the cousins get to see each other much more often. Having all this family support is really helping me emotionally - knowing that the kids are getting the attention that I couldn't give them alone. My mom has been my rock up here, driving me to appointments, making meals, and holding my hand through all my nonsensical anxiety attacks.

We have found a much better team of doctors up here, so I feel that my care is better managed than at home in Tucson. I am headed back up to Minneapolis in mid-Feb to be seen by the team up there. Hopefully, somebody there will be able to figure out how to "fix" me. Louise told me to buy a one way ticket and the team will put together a plan on how to proceed. It may be that they send us back to Chandler for coordinated care at home, or keep me in MN for a while longer. I may need surgery to repair some hernias and remove scar tissue, but we shall see. So in the meantime, I'm just trying to get better and stronger on a day-by-day basis. I'll try to remember to update my blog so everyone knows what's going on!