November 20, 2009

"Get Well Flowers"

I had two doctors appointments yesterday, but was so wiped when I got home that I did not get on to update the blog. My first appointment was with my surgeon. This is the surgeon who did my gallbladder surgery. He checked my incision sites and said they looked good, which I already knew. He said that I am about 85% recovered from surgery, but he doesn’t think that has anything to do with me still not doing well. He caught up on everything that has happened since my first hospitalization and feels bad that I am still this ill and that San Fransisco didn’t really come up with any answers. There is not much more that he can do for me as he is just a general surgeon, but he wants to keep updated on what is happening with me. So, for now I am released from his care and will see him “as needed.” He gave me a huge hug when I left and genuinely felt bad for me.

Next was my appointment with my GI doctor from Feather River. Ugh. I waited for two hours to see my doctor, only to have the WRONG doctor walk in to see me. So then they had to move me to another room and wait to see MY doctor again. So, my doctor came in and talked to me. We went over all my test results and all I have been through. So far everything has been normal. He says he is happy not to have to tell my I have Crohn’s Disease or another ailment, but also feels bad that I am this sick without any answers. I told him my GYN is doing the laporoscopy on Monday, and he was happy about that as this doctor can look at the outside of the bowel and everything where as GI doctors just look inside everything. He went over a focus of Proper Lifestyle. There are eight points to a healthy lifestyle, following this acronym that he went over. I will blog about that separately. Anyway, one of the main things to focus on right now is proper rest so we are trying to get me resting well. He is going to see me again on the 17th of December, after surgery, and see how I am feeling then. We are hoping surgery shows something and I will be on my way to doing better. If I am still sick then we will figure something out from there. Most likely I will have to be referred out of town again as everyone locally is just baffled as to why I am so ill and is not sure how to help me. This GI doctor I am seeing happens to be a Christian and has prayed with me before every procedure he has done. So yesterday during my appointment he asked if he could spend some time in prayer with me. I of course, said yes. So he prayed with me before I left. It means so much to have a Christian team of doctors overseeing my health care. I can’t tell you what a difference it makes knowing they are trusting in God’s healing powers as well. It is so awesome.

Well, it is Friday night and my surgery is Monday morning. I have to be at the hospital at the crack of dawn and my surgery is first thing in the morning. I will be hospitalized for the first day and will most likely be released on Tuesday. I am hoping to feel half-way decent on Thanksgiving and enjoy a day with friends and family. Please continue to pray for my health. Please pray for both physical and emotional strength. Pray for the doctors as they work on me and pray for God to guide their hands and minds.

Thank you all for your amazing support. And if I don’t end up writing before then…Happy Thanksgiving. Remember to count your blessings in your life. I am thankful for each and everyone of you.

With a thankful heart,

Diane

Me and My Purse (Mom's a nut)

Climbing back to my seat at the races

My famous picture face!

I love my mommy!

When I uploaded pictures to my computer from the last couple of months last week, I found these pics. These were taken a week after my gallbladder surgery, and 3 days before this horrible sickness became a reality. While I was not completely well here, I thought I was getting better and was looking to the future. Somehow, even though I wasn’t feeling 100%, I look happy here. And now I long to be this happy again and have fun like this night with my mom. So, I thought I’d post a happy moment. I can’t wait to feel well again soon and be able to go out and have fun again. I miss doing things with friends and family. I miss the fun moments my mom and I share together. Hopefully answers come soon.

I had my pre-admit appt. at the hospital today. Tomorrow I see my surgeon who did my gallbladder surgery, and my GI doctor from Feather River. Both are follow-up appointments so it shall be interesting to hear what they have to say. Please pray the appointments go well and are actually worth my time.

Thanks again for the love and support you all have been giving me. This monday, the 23rd is my surgery. I will be hospitalized overnight. Pray that the surgery yields answers and that it may lead to me getting well again.

Blessings to all of you. I am THANKFUL for you all being in my life.

November 15 2009

Teddy Malachi taking my place!

Choosing to rejoice in the small things, I will share the story of my Teddy Bear.

During my first hospitalization at Feather River Hospital, I told my mom I really wanted a teddy bear. I was hospitalized out of town from where we live so mom could not just run home and get my teddy bear I already owned. Not to mention I really needed a new one anyway, as Teddy Kirby is getting very old. So, mom went to the store in the town I was hospitalized and got me a new teddy bear. When she brought it to me, I fell in love with him.

Now you can call me crazy being an adult, and loving a teddy bear, but when you are lonely in a hospital and scared and not feeling well, it is nice to have something to snuggle with. I was blessed to have him and really wanted to name him something with a Christian meaning. I was struggling to think of something and then God gave me the name “Malachi.” Malachi is the name of the last book of the Old Testament. I did not know the meaning of the name, but knew that God had put the name on my heart. And so Teddy got his name: Malachi.

I finally looked up the meaning and discovered that Malachi means ‘my messenger’ or ‘my angel’ in Hebrew. How appropriate is that? Malachi was like my angel watching over me in the hospital. I just think it is cool and wanted to share it with my readers. Hopefully you all don’t think I am too crazy. Anyway, I took Malachi with me to San Fransico at Cal Pacific Medical Center and then again when I was just hospitalized at Feather River again. Actually it was really funny this last time at FRH because my doctor walked in to see me, saw Malachi and remembered him. He said “did he go with you to San Fransisco?” I told him yes, of course! It was comical to me that my doctor even remembered my bear. Too funny.

Anyway, there you have a more “normal” blog. Something a little lighthearted to write about for a change. Hope you enjoyed it. Blessings to everyone reading my blog. Thanks for your love and friendship!

November 15, 2009

I finally got to upload the pics from the last two months to my computer. So I am able to share some pics finally. Now the pics in this post are not the funnest pics to look at, but since they are from my PIC line, I had to share. lol. Like the Pun? No, really some people asked to see them so I am sharing them. My arm got infected from the PIC line and I was allergic to the dressing they had around the PIC line to protect it. So, if I ever have to get a PIC line again, I have to tell them that they have to come up with another type of dressing to protect it, because I can’t have this happen again. I was on Vancomycin for a week because they could not take any chances since the PIC line runs staight to your heart. Okay, here is what my arm looked like the day I left the hospital in S.F.

I thought you all might be getting tired of the update posts with no pictures. I just obviously have not been taking many pictures, and pics that others have taken have not been uploaded to my computer. But alas, my brother took a pic of me in the hospital and posted it to his facebook. So, I was able to save it to my computer to share with you all. Yes, I am being daring and actually posting what I looked like in the hospital. Not bad for being so sick, I guess. As you can see, I refuse to wear a hospital gown and always keep my own pajamas on. As much as I’ve been hospitalized recently, I at least want to be comfortable!

Me in the Hospital 11/9/09

November 11, 2009

Wow. It seems that I can’t keep up with the updates because my health is constantly changing and the treatment plans keep changing daily. Last Friday November 6th, I ended up back in the hospital. The story goes something like this:

Thursday night the 5th of November I got in excruciating pain. I had had a very long day after dealing with errands, getting the car accident stuff taken care of, doctor’s appts., and company at my house in the evening. I just crashed Thursday night after taking pain meds and thought I would wake up Friday morning feeling better. Well Friday morning came and I could barely move. My friend Heather, who is helping take care of me, woke me up Friday to get ready for my doctor’s appt., and I felt horrible. She got me up and dressed and to my appointment. When we came home she gave me more pain meds and every few hours the pain meds kept coming. By about 5pm I was beside myself in pain and tried everything to get the pain to calm down.

I put on my tens unit hoping it would re-signal the nerves and calm the pain down. That didn’t work. My brother and I got in the hot tub hoping the hot water would help my body relax and that did nothing. Finally about 7pm, my brother and I decided that I needed to go to the emergency room. Danny took me to Enloe hoping to get the pain under control through IV medications. I texted my friend Heather when I got to Enloe to let her know I was there. She and her hubby rushed down to Enloe to help out and be with me. Heather called her mom-in-law to go sit with my mom at home as my mom had just had surgery that day too.

Anyway, Enloe started and IV and gave me pain meds. After 14 mgs of Dylotted, and not really any difference in the pain level, they decided that I needed to be admitted. After some discussion about doctors and Enloe and my time at Feather River, it was decided that I was going to be ambulanced up the hill to Feather River to be admitted there, as that is where I was originally hospitalized when all this began. So, about 10 or 11pm Friday night I was ambulanced up the hill. Heather had run home to pack a bag for me and she followed the ambulance up the hill and got me settled in with my nurses. Bless her heart. Thank you SO MUCH Heather. You are a true blessing to me.

So, Saturday morning my GI doctor came in to see me. He had me fill him in on my time in S.F. and we discussed what we should do next. We decided that it would be best to do a colonoscopy as no one had checked out the lower GI track through any of this whole ordeal. So, Saturday was spent miserable drinking stuff to clean my system out and I had a colonoscopy on Sunday. This test revealed that everything was normal. This of course, was good and bad. Good that there is no cancer or anything, but bad because we still do not know what is causing the pain.

Monday came and the decision was made to release me from the hospital as they had no medical reason to keep me. So frustrating. Constantly being sent home with no answers. I have still been unable to eat much of anything and am basically surviving drinking Ensure each day. I followed up on Tuesday with my family doctor who inturn sent me to my GYN and told him he needed to do a laporoscopy.

So today I saw my GYN. He did an exam and then spent an hour talking over everything I have been through these last three months. He is hesitant to do surgery because he isn’t sure surgery will reveal anything. However we both decided that it is the only option that makes much sense right now because I have been through several tests and nothing is showing up. So, he scheduled a laporoscopy for November 23rd. He is going to admit me to the hospital for the day so my pain can be controlled after surgery. He is going to take biopsies of anything that looks suspicious and he is also going to do a cystoscopy, which is putting a scope into the bladder to stretch the bladder. This is because I have a bladder disease that also causes pain and I have had lots of pelvic pain recently. He wants to address the bladder issue while we are in there. My bladder is inflamed right now just because when something else in my body gets inflamed, the bladder doesn’t stand a chance and just gets inflamed too. So he is going to work to treat that as well. The third thing he is going to have done as well is to have the anesthesiologist do a spinal block. He is curious to see if doing the spinal block releaves any of pain or not. So, the block will be done at the beginning of surgery.

Since surgery is still 12 days away I am a bit apprehensive at how I am going to do until then. I only made it at home for eight days before ending up hospitalized again this last time, so I am praying that I can do okay and stay home until surgery. Please pray for pain relief and for the nausea to calm down as well. Please also pray for me to be able to eat. I have begun to be able to keep minimal amounts of food down. The GI doctor started me on pancreatic enzymes while in the hospital over the weekend. I take three pills before each meal to help the digestive process. Hopefully this helps me be able to eat more as time moves on.

Thanks again for all the prayers, love and support. They mean so much to me.

For now,

Diane

November 5, 2009

Hi friends. I found out people really appreciated my last blog update so I thought I would try to keep this updated with what is happening. So…

I saw my GYN on Tuesday. He is convinced that it is a problem with my common bile duct. Normally the bile duct secretes histamines. However, my doctor thinks that mine may be secreting cytokines and leukotrienes. If this is the case then when I try to eat the bile duct may go crazy secreting these two things thus causing pain. So, he is putting me on Singulair, which is a med that blocks these two things from being produced. If this is the case then by these being blocked from being produced my pain should diminish and I should be able to eat again. Honestly he says it is a long-shot, but is worth the try. I am willing to try anything right now to get better so I started this medication this morning.

Wednesday(yesterday) I saw my pain specialist. He thinks the problem is the sphincter muscle in my stomach. He thinks it is contracting so much from the stomach acid. He says it is a huge problem that I am not eating because the same amount of acid is being produced but there is nothing for it to digest. I am currently on Prilosec, but he says he is not impressed with that drug, and instead or combined with, he wants me to take Zantac three times a day. After I take the Zantac he wants me to try to eat some yogurt. Right before I eat the yogurt I am supposed to take Reglan because that will help nausea and move the yogurt through my stomach faster. He is hoping this will be the start of me being able to process food again. Then I am to move on to mashed potatoes and other milk-based products. The reason for the milk-based products is because they are more of a base and not acidic foods.

As you can see, every doctor has their opinion of what is wrong and how to treat it. I appreciate all the help I can get, but it does get frustrating having no one on the same page. Right now my pain is still so bad I can hardly even describe. The last two nights I have slept very little because the pain is SO bad. I almost went to the ER again early this morning because I could not get relief from the pain. It is hard right now because I am not sure when to say enough is enough and give up at home and go back to the hospital. I also don’t know what the hospital will do since even S.F. did not have answers. At some point though, so doctor somewhere has got to have answers.

A friend of mine has been raising money for me to fly to the Mayo Clinic in Rochester Minnesota. He believes that is the only place I may get answers. It is scary to think of going across country for treatment, but that may be the only answer and it is incredibly overwhelming that a friend cares that much to work to get me there. So, we will see what happens with this.

Monday, November 9th I have an appointment with the GI doctor who saw me at Feather River and is the one who transferred me to S.F. I believe at this appointment the reality of putting a J-tube in will be discussed. Let’s hope God heals me by Monday and that I begin to get better. I will post on Monday and let everyone know what this doctor says.

Right now my days and nights are long. My brother flew in from Michigan last night to help care for me until Monday. My mom has surgery tomorrow as well, so he needed to be here to care for her and help me. It will be a crazy weekend. To top all of this off, my mom and I were in a car accident yesterday. We are pretty much okay, but my neck/shoulder is messed up. I went to the chiropractor yesterday and go Tuesday as well. I may go tomorrow, but it just depends how I feel. They told me to call them on Friday as the third day is the worse after an accident and they are expecting me to hurt pretty bad. As I sit here and type my neck is hurting. I may just call and make the appointment. Actually I just did. So I am going in tomorrow morning.

Anyway, okay I think you are updated now. Thanks for the continued prayers friends. You all are amazing and are keeping me going. Love you all.

Diane

November 2, 2009

Good evening friends. I have been out of the hospital since October 29, 2009. For those who don’t know, I was hospitalized on October 14, 2009. I spent one week in Feather River Hospital and then was ambulanced down to California Pacific Medical Center is S.F. for another nine days. A total of 16 days in the hospital, and still very few answers. The only thing the doctors came up with is that my stomach is “Hyper-sensitive” and the nerves do not want to allow anything on my stomach. I am still unable to eat as my stomach hurts insanely bad to put anything on it, or I puke everything I try to eat. I am drinking Ensure to try to keep up nutrition on some level.

While at Cal Pacific in S.F., the had inserted a PIC line and had me on I.V. nutrition. Then when they decided they didn’t know how to help me, the chose to send me home and take the PIC line out. I’m not sure why they think it is not a big deal for me to not be able to eat at home, but yet they had me on nutrition in the hospital. It is crazy that I still can not eat and am basically wasting away in pain at home. The hospital in S.F. put me on two nerve meds to try to get the nerves in my stomach to calm down and allow me to eat again, but they could take 4-6 weeks to work, if they even work. So I am struggling to get by each day and make it through.

I saw my family practitioner today and he is running more lab work and getting in contact with the GI doctor who saw me locally. They are considering putting a “J tube” in directly to my small intestine for nutrition. I am fine with that as long as the continue to try to figure out the problem as well. Putting a feeding tube in me is not “the answer.”

The docs at S.F. also said this could be related to my endometriosis and interstitial cystitis and the chronic pain I live in. I see my GYN tomorrow and will probably be having a laporoscopy in the next two weeks to see if there is anything gynecologically going on. It will at least be one more thing to rule out. Then Wednesday I see my pain specialist to talk about “managing” the pain.

I am on some heavy pain killers. One long-acting and one for breatkthrough pain. I will not even discuss what these drugs are – so I do not alarm anyone.

Please continue to pray friends for my health and that God would heal my body. Please pray for wisdom for the doctors if God is going to use the doctors to heal my body. I am incredibly weak and growing weary as I try to deal with this. I can’t even begin to describe the physical pain I am in and what that pain does to me emotionally as well.

Thank you to so many of you for praying for me, supporting me at home in the hospital. Many of you drove miles and miles to visit me in the hospitals and I can’t say thank you enough or even begin to express my gratitude. One day when I am better I hope to thank each one of you in person. You are all my lifelines right now and I am forever grateful for you all being in my life.

For now,

Diane

October 11, 2009

Sunset before surgery

Hello friends. Thanks to all of you who have been faithful in checking my site for updates to know how I am and how to pray. I am longing for the day when I feel up to posting fun stuff again. Oh to write of my goings-on of having fun and what I am up to.

For now I am still recovering and hoping to feel better one day at a time. I am definitely better than the first few days after surgery, just still struggling to make it to that 100% mark, or even 90% for that matter. The surgery pain is almost completely gone. I still have some crampy-pulling feelings, like it is just still raw inside and healing. The “attacks” from the gallbladder are gone, but now it is a struggle of what to eat. Ironically the doctor and all the paperwork I was given say to eat a regular diet with no restrictions. I think that is silly, so I have done my research online and have followed closely a “post gallbladder surgery” diet. However, even with that I am struggling. Everything makes me sick and I have to be close to a bathroom at all times. I may end up calling the doctor this week to ask what I can do about this.

I have still been having some pretty bad pelvic pain and am not sure what to think of this, nor what doctor to talk to about it. I have been in physical therapy for it since May, been to a pain-specialist with two surgeries in the past year for it, and been to my family doctor who sent me to the physical therapy. My orginal GYN that has dealt with it for years is the one who sent me to the pain specialist and had basically washed his hands of it. So I don’t know if I should try getting back into him or what. He though, is the one who caught my gallbladder problems and got me sent to the surgeon for that. So I just don’t quite know where to go from here for that.

I have not been sleeping well for the last few nights and that is really frustrating. Even with sleeping meds I am still not falling asleep for hours and then only sleeping for three hours at a time after that. This is frustrating in itself.

For those of you who have called and have not heard back from me, I am sorry. I am honestly overwhelmed right now and not much in the mood to talk. I love all of you and appreciate your concern. I am just quiet right now and not really up for much conversation. It is one of those odd things in life. I want support and want love and encouragement, but it is hard to talk about what is going on and feels better sometimes to shut myself off. If you are on facebook, you can find me on there and at least most always get a “status update” to know how things are going. I tend to update that once a day atleast, even if just from my phone.

In other things, the weather here has turned to fall and I love it. Though these next few days it is actually going to rain and be winter-like, then back to Fall weather again. It is my goal this week after the rain goes to get out and enjoy a walk through the park with the fall leaves. Perhaps some of you locals would like to join me? I am making that my goal I guess for the end of the week. My good friend says I have to have goals to work towards, so I am setting them even if they may seem small to some.

For you prayer warriors out there, please pray for continued healing. Please pray for strength mentally and emotionally. It is a real struggle these days to make it through. Please pray that God would reveal his will to me as I seek His direction in these next few months. Where do I go from here?

Again friends, thank you SO MUCH FROM THE BOTTOM OF MY HEART, for all you have done. Your love does mean so much to me.

Blessings to you and yours.

October 8, 2009

Well friends it has been one week since surgery and I am finally getting around to post a report. I had my follow-up appointment with the doctor today so I thought it’d be a good time to report how I am doing. It has been a rough recovery, but I am certainly better than I was day one and two. I am still sore and tired, fighting some nausea still and have a low-grade fever that seems to linger. Overall though I am moving better, not hunched over like right after surgery!

Today the doctor said that the pathology showed Chronic Cholecystitis. You can click the link to read the medical definition for it, but basically it means that the gallbladder has been sick for awhile and my symptoms match up to what has been wrong with me and why I ended up in the emergency room last month. The doctor is confident that I will feel better, even though I still don’t feel great at the moment. He says it is taking me longer than “normal” to feel better but that some patients just don’t bounce back as quickly. I reminded him that this was my fifteenth surgery that I wouldn’t expect my body to react as well as some other patients. It has been a trend the last few surgeries to take a few weeks to really feel up to par.

The surgeon did say that I don’t have adhesions within the abdomen area which is a big “PRAISE JESUS” because with as many surgeries as I have had my tummy area should be filled with adhesions. I have always done as the doctors have said and walked a lot after surgery to keep scarring minimal, so that has helped. But basically I am sure that God is the great physician and has kept the adhesions from forming. The doctor also took an extensive look at the liver and said it looks absoulutely fine and that there is nothing to worry about. At the same time he said that whatever was showing up had to have been so far inside the liver it wasn’t a problem. So honestly I am still a little confused as to whether or not I need to push someone to investigate further. If there is a problem I certainly don’t want to let it go, but I also don’t want to freak out over nothing.

As for how I am feeling now with the soreness and nausea the doctor and I disagree on pain management. He thinks I am possibly nauseated from the Narcotics. Doctors always say this to me after surgery and it is never the issue. Anyway, he says I should get off the pain medication and try just tylenol (because I can’t take Motrin). For some reason I think he forgot that I deal with Chronic Pelvic Pain as well and have always been on heavy pain meds for this, so to just quit the Narcotics isn’t exactly a choice, not do I think that is why I am nauseous. Anyway, basically I am hoping that another week of recovery will end the surgery pain and soreness and nausea and then we will see how I feel.

If I think back to all my other surgeries it has always taken two-three weeks before I feel completely better. It is always around this week one follow-up doctor time that I am stressing not understand and not having the doctors understand why I feel the way I do and wondering if surgery was worth it and if I am ever going to feel better. But it has always been after two extra weeks recovery time it seems my body makes the difference and starts to perk up. I am hoping and praying this will be the case with this surgery as well.

Something I have not been wanting to admit or talk about because it scares me is the fact that two nights ago my Pelvic Pain came back in full force. This is has hit me hard and made me extremely emotional because I was so hoping and praying that this surgery would be the key to a healthy future. I was really hoping these gallbladder problems were completely connected to my pelvic pain and that I would feel better and finally be pain free, able to get back to life, or start a new life as the case may be. But at least for now, it seems that the pelvic pain is still there and I have had to take the pain meds to control that as well. I am at a loss for words and am emotionally and physically weak to deal with all of this. I just want to feel better and be able to go back to school or work whereever God leads me; but at this point I still don’t know if God is choosing to make me well enough to get back on feet or what. So, I just ask that you pray for the surgery pain to continue to heal and get better and that God is would continue to heal my other chronic pain and take these ailments from me. I do want the Lord’s will to be done, whatever that is. I am just growing weary, or have been weary. Ugh. Trying to stay strong and press on.

Thank you to everyone that has called, prayed, sent flowers, ran errands and come and visited. Your friendship and love means so much.