What a WEEK!

Happy belated Thanksgiving! Typically, the week of Thanksgiving is one of relaxation, food and family. I purposely avoid the grocery store by getting everything I need the week before, my mom and mother-in-law have every detail planned out weeks in advanced and the holiday goes quite smoothly. Not this year! Don't get me wrong, we DID have a great time with our families, everything worked out well in the end, and we all had a good laugh over all that happened. However, much happened before that big laugh to try and mess with our holiday plans. Mom was sick over the weekend and came home from work early with a fever on Monday. They also put an offer in on a great model home. We were all on pins and needles waiting to hear Monday night and all day Tuesday. A few minutes before it was to expire on Tuesday, they got a counter-offer. In the meantime, my stomach pain that started 6 weeks ago was getting so bad that I could no longer eat anything without severe pain. If we'd had a babysitter in town (in-laws at camp) that was fever-free (my parents), Scott would've taken me to the ER Tuesday night. Since we didn't, I managed until Weds. AM when I called Dr. Agnihotri's office and he would see me at 2pm. I called my mom to see if she could babysit (fever and all), as I would need Scott to drive me to my appt. She and dad were signing papers for the house at the time, but told me she probably couldn't, as my brother was at the ER. Wait, WHAT? Sure enough, Rob was also having abdominal pain and his wife convinced him to go to the ER. Long story short, both of us had abdominal CT scans that showed nothing. He had surgery to remove scar tissue from a 20 year old surgery and to check out his gall bladder b/c they thought one of those was the problem. He had some scar tissue, but not enough to cause that amount of pain so we are praying that it takes care of the pain. I was put on Nexium and by Friday night my pain started getting better. At one point on Wednesday, our family was bouncing around to most of the city's hospitals. Fun, fun! Rob spent the night in the hospital, but was able to come home Thursday morning. He was doing well enough to join us for Thanksgiving dinner at our parents' house, the final event at the old house. It wasn't easy keeping six kids entertained in a nearly empty house, but we all had a nice time together and have so very much to be thankful for!

Most of you know that my parents were planning on moving on Friday and Scott and I were planning on going to Indy for the weekend Fri-Sun to relax. Everyone thought that would be fine, as mom and dad only had a few large items left to move on Friday and we weren't going to leave until noon or so. Without Rob's help (you know, surgery and all), it was a little more difficult. The builder was kind enough to allow ma and pa to move some of their furniture into the garage at the new house, instead of hauling it up to the lake. What a time saver! While mom, dad, Scott and Jim (good friend) loaded up the moving truck, I was having a near panic attack as I realized I booked the hotel for the wrong weekend. I went online to get the phone number for my inlaws in case anything happened with the kids and realized what happened. Since I named my own price on priceline.com, it was nonrefundable and unchangeable. Yikes! We really didn't have the extra money to do that in the first place but it was something we needed so we splurged. I knew there was no way I could justify taking the money out of savings twice. I called priceline and sure enough, there was nothing they could do even though I was crying hysterically (does that tell you how much I needed to get away???). I decided to try calling the Marriott as well, I had nothing to lose. I composed myself as much as I could, then spoke with the front desk manager, Ashley. I explained what had happened and why it was that we booked the trip in the first place, etc. She offered to call priceline on my behalf. I didn't think it would do any good but I said, "sure." A few minutes later, Ashley called to tell me that priceline will be issuing a full refund. Woo hoo! I am so thankful she helped us out. She had every right to stick to the policy, but she didn't, and I am so grateful to her. I jumped on hotwire.com and booked another hotel right away. It wasn't the Marriott downtown, but at least we were able to get away and relax and that was what we needed.

Appt

Quick update on yesterday's appt: Basically, Dr. Agnihotri just doesn't know what is wrong with me. The blood work and ultrasounds just aren't off enough to really raise big red flags and point him in a certain direction. Scott was sooo impressed by how thorough he was, though. He spent another hour or so with us yesterday. He is sending me to an endocrinologist to pursue the adrenal gland possibility, and he also mentioned that it could be chronic fatigue. There recently has been research that links a specific virus to chronic fatigue, but the test is not widely available, and even if we were able to "prove" that I had it, there is no cure or medication to control it at this point. There are not very many endocrinologists in this area, so my appointment is scheduled for February 18th, but I am on a waiting list in case someone cancels. I am not discouraged, as I've been on lists before and usually get in early. As for the stomach issues, Dr. A put me on pepcid Rx in hopes that resolves the pain and nausea, if not he will do an abdominal/pelvic CT scan in two weeks. Please pray that the pepcid just works so we can cross at least one symptom off the list! Also, please continue to pray for the Floor family as Troy battles his colon cancer. He goes for his consultation with the Cleveland clinic in a few weeks and surgery is scheduled for early January (baby due in February), as well as my dear mentor, Judy, whose stage 4 breast cancer has come back. Pray for strength for both families as they fight this terrible disease. Thank you! Karin

Lab Results are in!

The lab results are in! We really can't tell a whole lot from them, but we are hoping that Dr. Agnihotri will know where to go from here based on this info. Most of the labs came back just fine; the three that were off are: cortisol was one point high, AST (SGOT) was one point low and MCH was 0.3 high. Cortisol is the one we were most curious about, as that deals with the adrenal glands, but we all thought it would be too LOW, not too high, so this changes things in my mind a little bit. We were thinking that perhaps I had an adrenal gland disease (if it was too low), but it being too high could mean there are tumors in there. Even if there are, though, they are usually benign (only 1-2 out of one million are malignant). Since it is not that high, though, we will have to wait and see what the doctor says. For now he does not want me going back on the medication that raises my blood pressure since that would also raise my cortisol level even higher. I will need to closely monintor my bp in the meantime to make sure it doesn't go "too low." If only one of these doctors would define "too low" when they leave these messages on my machine! Oh, and I moved up my appointment to Tuesday, as we are celebrating my grandmother's 80th birthday this weekend and I wanted to be well-rested for her visit. I will post more after I see the doctor on Tuesday!

Ultrasounds

My ultrasounds from Monday came back looking good, so we are very pleased to hear that. I will go this Friday to have several labs run, including a re-do for the adrenal glands. Apparently, the Rx I'm on to raise my blood pressure is also used to treat low glucocorticoid levels caused by disease of the adrenal glands (in other words, the VMA test results are worthless, as they would show my levels as being normal even if they aren't, since I was on that med). I've been off of that med since last Friday to get it out of my system for the test on Friday and I can tell a difference in the way I feel (extra fatigue, etc). I don't have anything planned for tomorrow, so I am looking forward to sleeping in, followed by resting on the couch, with perhaps a nice nap thrown in for good measure! I will go back to the internist next Friday, the 20th, for the test results and to see where we go from here. I'd like to just say thank you to my dear sweet friends who have been checking on me lately. I've really needed that the last few weeks, and I appreciate all of those phone calls, movies, plans for DeBrands, invites to your homes, etc so much. Some days, just having those things to look forward to are what keep me sane!

Internist

I went to the internist yesterday for the first time, and so far I am very pleased. Granted, he doesn't know what is wrong with me either, but he isn't afraid to admit it, and he spent an hour with me going over my reams of paperwork, asking questions, etc. When he examined me, the one strange thing was that when he pushed on the right side of my abdomen, I had very sharp pains every time he touched that side. I don't remember if I've mentioned this before, but the past few weeks I've had no appetite and only eat because I know I need to, not because I want to. Nothing sounds good (except TOPPIT pizza!), not even chocolate! I've never uttered those words before, and hope to never again, ha ha! Really, though, eating has become something I dread now because usually my stomach hurts immediately afterward. Thus, Dr. Agnihotri has ordered an ultrasound of my abdomen on Monday morning. He also has ordered several fasting labs to be run on Friday and I am not to take one of my meds until after that. He is still wondering if something is going on with my adrenal glands, even though the VMA test came back fine, so he is running a different test for that. Even though my neurologist has not called me with my MRI results, the internist had a copy, so I was able to find out those and they look good!! The only thing that showed up was a 3mm cyst on the left side of my brain, which is apparently not a big deal, so we are very happy about that. The bottom line is this: Dr. Agnihotri recognizes that something is going on, but he doesn't know what. He is running all of these tests in hopes that something jumps out at him. To be honest, I have no idea where we go if these all come back normal, but I am at such peace knowing that he is willing to do his best to help figure me out.
Today, we took the kids to Scott's parents' house to jump in the leaves (since we don't have any) and then to my brother's house for some outdoor fun with the cousins. It was so nice to get out and enjoy the sunshine, and just spend some time with family. My youngest nephew even giggled and laughed for the first time ever while I was holding him! I feel so blessed when I am around our family or friends. You just can't beat days like today!

I've been waiting to post for a few reasons. First, I knew we would be getting a "new to us" computer this week, thanks to Scott's sister and the great Kaboom! organization (THANK YOU, Mandy!!) Second, I was really upset and disappointed in my visit with the neurologist last week. I had such high hopes for that visit, and I was really not pleased with the doctor at all. Third, I was hoping to share results of all those tests and the MRI. I was able to get a copy of the VMA and blood work from medical records, but Dr. Al Hamda's office won't return my calls to tell me what they mean. So, based on what I can tell from the medical records, here's what I think we know: my thyroid is functioning correctly, and the VMA results (which I finally remembered was to check for tumors in my adrenal glands) look good. The only thing that came back high was the hematology - manual cell counts lab, which shows my ESR level is at 32, but should be between 0-20. I have no idea what the means, but the one I was eager to hear about was the VMA anyway. In the mean time, my brother called last night to recommend going to an internist to manage all of these different doctors. What a great idea! I am working on finding one as we speak. I think I will look for a new neurologist while I am at it. Scott and I are also planning on getting away for a few days over Thanksgiving weekend, thanks to his parents' willingness to watch the kids and hotwire.com's willingness to find us a cheap but nice hotel room in downtown Indy. We can't wait to get away for a few days and pretend that I am healthy!