January 20, 2114
I know that a large part of my posts on here are about my health problems, but it has been a big part of my life for the last 7 years. Until I was 18 years old I was a normal, healthy person. The biggest thing I ever went to the doctor for was sinus infections. You never expect that you will be the "sick one." But the next thing I knew I was having blood transfusions and colonoscopies, being hospitalized, hearing the word "disease," learning which pain meds work the best and with which dosages, etc, etc. Even though it's not what you planned, you have to go on with your life and take it one day at time.
I have been writing this blog for 3 years, but I thought I would briefly go through a timeline of what has happened, for myself, and for those who have not known me for the last 7 years, here it is, from the beginning.
June 2006-Diagnosed with ulcerative colitis after being terribly sick my whole freshman year of college. Hospital stay #1. Stay 3 days.
October 2006-Bad flare up, steroids not working. Hospital stay #2. Stay 5 days.
Admitted again to receive medicine that needed to first be given in an IV. Hospital stay #3. Stay 3 days.
November 2006-March 2007-I tried many different medications that would work at first and then stop working. Even 100 mg (that's A LOT) of prednisone didn't do anything anymore.
April 2007-Visit a surgeon in SLC who confirmed meds weren't working and I needed surgery to have my colon removed. Very sick again. Hospital stay #4. Stay 4 days. This time IV meds did NOTHING, and I knew I needed surgery too.
May 2007-Surgery in SLC. Hospital stay #5. Entire colon is removed, a jpouch formed, and temporary ileostomy made. Everything goes well for the most part, but I had a couple bumps. Some breathing issues and being able to eat and hold down solid food. Stay 8 days.
The day after coming home I woke up with a 104 degree fever. Back to the hospital. Had an infection and blood clots. Hospital stay #6. Stay 6 days.
2 days later wake up throwing up. Go to the ER, cannot find anything wrong. 2 days after that, wake up throwing up again, and later woke up in terrible pain. Go to ER and taken by ambulance to SLC. Admitted to ICU. I had a bowel obstruction and my adrenal glands were failing. (Side effect of steroids). Hospital stay #7. Stay 6 days.
August 2007-Go back to SLC for reversal of ileostomy. Everything went really well, no complications. Hospital stay #8. Stay 4 days.
I started my junior year of college about 3 weeks later. I did well for the most part. I experienced pouchitis for the first time a few months later. Very similar symptoms as ulcerative colitis. Antibiotics always kicked it. I was glad I had had the surgery. I could eat things that used to make me very sick. I could focus on school without being so sick.
May 2009-Graduate with a Bachelor of Science in Dietetics. Very proud that I accomplished this with this terrible disease.
August 2009-May 2010-I lived in Boise and did my internship which required working all day, one day of class per week, and countless assignments, case studies, papers, presentations, etc. I actually felt pretty well most of that year. Except when I caught the flu from my nephew Nathan. haha.
May 2010-January 2011-Start to have problems more frequently. I started to lose weight and was not feeling well.
February 2011-Hospital stay #9. Stay 2 days. The doctor did an upper and lower GI scope, CT scan (after which I threw up all the contrast right in front of my niece Jenna, poor girl), ultrasound of gallbladder, blood work, etc, and we couldn't find why I was having more pain.
A few days later I had some tests came back that I had done a couple weeks before, saying that I had rheumatoid arthritis. I started an immunosuppressant to treat it and found relief.
2 weeks later I met my dear sweet husband and went on our first date. :) :) :)
March 2011-Have surgery on my sinuses to help the chronic problems I had had all my life. Went home the same day. The surgery helped me a lot.
April 2011-See a PA at the University of Utah hospital in SLC for a second opinion. My GI doctor sent me there because we couldn't find any answers. We changed a couple medications to see if that would help.
July 2011-Chris proposes and we are engaged. :) I did well most of the summer.
October 2011-Chris and my mom take me to the ER exactly 1 week before our wedding. I was just having lots of pain and was a little obstructed. They helped clear it, I felt better, and was sent home. This was the first of many ER visits over the next few months.
We had a wonderful honeymoon in the Bahamas and I felt well the whole time.
December 2011-Back to the U of U for a scope. Dr states that she found inflammation above my pouch, in my small intestine, which meant that I actually had Crohn's disease. I was told I probably should have never had my colon removed. I started a medication called Cimzia, that is in the same class of medications as Remicade and Humira. It was a shot I gave myself. I saw improvement in my joints, but not my stomach.
February 2012-After several other ER visits where I was sent home, my doctor directly admitted me to hospital when I called him one morning complaining of severe abdominal pain. He was not on call, so other GI doctors saw me. We tried steroids, etc, but did not feel any better. Hospital stay #10. Stay 8 days. The doctor finally sent me home because I actually ate something. The next morning I was in the ER again in lots of pain, but the ER doctor thought that I was just drug seeking, didn't do anything for me, and sent me home.
March 2012-Chris and I and his dad traveled to Logan, Ut to talk to a family friend knowledgeable about some alternative methods to treat Crohn's. I was willing to try anything. By the time we got to her house I was in tears, and begged to be taken to the hospital. This was probably the most pain I had even been in in my ENTIRE LIFE. It took quite a bit meds to even take the edge off. TheY did a CT scan but found nothing wrong and released me. We stopped at a gas station on the way out of town where I threw up several times, and again begged to go back to the hospital. Chris convinced me that they would just send us home again, and that we just needed to get to Twin were my doctor was. Chris' dad drove the 2 1/2 hrs home and I laid on Chris' lap in the backseat on the way home. I was able to sleep a little, but it was probably the most agonizing 2 hours of my life (up until that point). We were not in the ER in Twin very long when we were told my doctor was on call and was admitting me. Hospital stay #11. He did a scope later that day and said that my jpouch look ischemic (not receiving blood supply), and that he was sending me to SLC. We were flown by life flight the the U of U. I guess you could say that was Hospital stay #12. The first 10 days I endured countless tests and procedures to try to find out what was wrong. I was not able to go to the bathroom all of this time and my stomach was as big as a basketball. During this time I had a scope done and woke up in extreme agony (from all the air they pumped inside of me that I could not let out). The next 2-3 hours topped the pain that I had been in in Logan, and turned into the worst pain I had ever been in in my life. I cried and cried and cried, threw up, cried some more, I was sweating, then would get goose bumps, and kept thinking I couldn't take one more second. And then one more second would of course go by. My mom and Chris just stayed by my side. On the 10th day, they were doing another scope (using C02, not air, so it was not as painful) and punctured my bowel. So I went into surgery that day (which they planned to do in a couple days anyway). It was found out that my jpouch was twisted, not in the right place, diseased, and not receiving blood supply (hmmmm….isn't that what my doctor in Twin had said 10 days before)? I also tested positive for CMV (Cytelomegalovirus), which was probably part of what was making me very sick. They had to remove the jpouch and give me a permanent ileostomy. Also when I woke up, my left arm was numb, I could not even feel where it was at. I had to go through lots of therapy to even be able to life it up again, and my thumb and pointer finger still feel numb. I was released one week later, after 17 DAYS!
April 2012-About a week after being home I got a bowel obstruction and ended up in the hospital again with the NG tube and the whole charade. Hospital stay #13. Stay was 3 days.
I went home and was starting to feel better when I suddenly had severe pain again. Even though I resisted, we finally went to the ER, convinced that they would find nothing wrong and send me home again. To our great surprise they found that I was septic, with abscesses all throughout my abdomen. I was immediately admitted to the ICU, and a couple hours later taken to surgery again. Hospital stay #14. I woke up about 10 hours later still intubated and on a ventilator. They had originally planned to keep me on it for a couple days to keep me from being in too much pain, but I begged to have it taken out and I was breathing fine, so they removed it. During the surgery my bladder was attached to scar tissue, and they tore a hole in it while trying to separate it. I had to have a catheter for 2 weeks and went home with it. I also woke up with a feeding tube. I was on TPN as well until I could tolerate tube feeding more and was able to eat. I did tube feeding at night at home until I was sick of it and convinced the doctor to take it out. Eventually I recovered and made it back to work (slowly increasing back to full time).
August 2012-Chris and I move the Spokane (actually technically Chris came in August and I came in September after I found a job. It was a rough 3 weeks apart. I don't know how people do long distance relationships. We were terrible at it.
January 2013-Finally get in the see my GI doctor here in Spokane, who my doctor in Twin researched and said was the best (and I believe he is). I was having pain again.
February-May 2013-We try different medications and have different tests. I had an MRI and a scope that both showed no inflammation. I realized that I probably had a vaginal fistula, so I saw an obgyn, who referred me to a more specialized obgyn, who referred me to the GI surgeon, who did an Exam Under Anesthesia and found the fistula.
June 2013-Start Remicade to try to help heal the fistula. I felt amazing on Remicade. A-MA-ZING.
July 2013-Hospital stay #15. Had a bowel obstruction which cleared on it's own (and with an NG tube). Stay 4 days.
August 2013-Have an allergic reaction to Remicade. I was heartbroken. But I was switched to Humira.
September 2013-Another bowel obstruction-Hospital stay #16. Stay 5 days. Obstruction resolved again without the need for surgery.
November 2013-Hospital stay #17. Stays 5 days. Since this was the third obstruction in 4 months, we planned surgery for December 5. The plan is to take down scar tissue and take care of the fistula while we are at it. I was pretty sick after this stay and not eating well at all. The GI surgeon started me on TPN to help promote wt gain and healing from the surgery.
December 2013-I already wrote a huge post about this, but the surgery went well. We had the bladder/scar tissue thing again and I wore the catheter for 2 weeks again. The hospital stay was rough with nurses who didn't like to give pain medicine that was ordered. But I am done with TPN and have gained 15#!! Still have some issues to work through, but I am not in the pain I was in 2 months ago. Hospital Stay #18. Stay 8 days.
WOW! Like I said, you never think that this will happen to you, but I am glad it has happened to me, for these reasons:
-I have learned how loved I am, by my Heavenly Father and by my family, friends, fellow church members, and others around me. Seriously, if you ever want to know how loved you are, just get really really sick. I have been given so many gifts from other people while/after being in the hospital, and not just material gifts.
-I have gained a greater testimony of the Priesthood. I don't even know how many blessings I have had during the last 7 years, but it is A LOT! Each one has been special, comforting, and helped me handle my trials.
-I have a greater appreciation for the Atonement of Jesus Christ. He has felt everything that I have felt physically and emotionally. PLUS he has felt what you have felt, and what every other person who has ever lived or will ever live on the earth has/will feel. It is comforting to know that at least ONE person knows exactly how I have felt. Sometimes I just need that comfort. Which brings me to….
-I have come to know the love of my Savior for me. He had to love me (and you) a lot to not only suffer for our sins, but suffer our physical and emotional illnesses too.
-I have met many many wonderful people who I would never have met before. Some are friends online, some are amazing doctors or nurses I have had, and others are those that I already knew, but found out later they have suffered terrible things too.
-My faith in my Heavenly Father has grown far greater than it would have without this trial. Many times I have had to put all my faith in my Heavenly Father that everything would work out, that I could handle this trial, and so forth. He has always come through. Many prayers have been answered, the comfort of the Holy Ghost has been felt countless times, and none of us would find these things out if it weren't for trials.
I could go on, but this post is long enough. It is weird to look all the way back and see all of the things I have endured. I think I have had almost every test out there, (ok maybe not, but I've had a lot)! I've had x-rays, CT scans, MRI's, colonoscopies, sigmoidoscopys, upper GI scopes, barium enema x-rays (NOT pleasant), cystocopies, test for carbohydrates in the bowel, a small bowel follow through, exams under anesthesia, and I'm sure others that I can't think of right now.
I know that I will endure many other physically hard things in my life, and I have come to accept that. I know that having children will likely be a hard thing for me, but I know there are spirits waiting for me in Heaven, and that everything I have endured thus far will prepare for these wonderful children of God. The Lord has blessed me with the most amazing man by my side who I love more than I ever thought was possible. Because of this, I can do hard things!
And last, I just wanted to share this video. Every now and then I need to hear it again. Love Elder Holland.
Ups and Downs
February 10, 2014
That pretty much sums up the last month or so. I think overall I have recovered from my surgery pretty well, and much better and faster that I expected. But I have still had some things to conquer, and have had some ups and downs since then...
I think I mentioned in a previous post that the plan was to continue the TPN until the end of December. So we took all the supplies with us and did it while we were home, which was fine. The last few days that we were home I started to feel kind of crummy. I just felt like maybe I overdid it and needed to take it easy. I felt pretty tired on the Sunday and Monday after Christmas. Monday I also felt somewhat like I had a UTI. I've only ever had one other on in my life though, so I wasn't sure.February 10, 2014
That pretty much sums up the last month or so. I think overall I have recovered from my surgery pretty well, and much better and faster that I expected. But I have still had some things to conquer, and have had some ups and downs since then...
We drove home Tuesday. That was (supposed to be) my last night of TPN. The nurse came for a minute on Tuesday when we got home to bring us the tubing we needed for the last night, and she could tell I just didn't feel good. She asked me if I was ready to be off TPN, and suggested that maybe we wait to take out the PICC line until I talked to the doctor. The plan was to take it out on Wednesday (New Year's Day), but we decided to skip it. I went back to work on Thursday, and was glad it wasn't too busy because I was dragging all day. I called my surgeon that day and got an appointment for the next day, Friday the 3rd. The nurse came that afternoon to change the dressing on the PICC line, and I was sleeping when she came, and didn't even want to get up, so she did it with me lying in bed. I felt so sick. I found someone to work for me the next day. I felt terrible that I was already doing that, after one day back, but just didn't see how I could manage it. At my doctor's appointment I told my surgeon about everything that was going on. I felt like I had the flu, with upper respiratory stuff going on, and bad body aches. I hadn't been able to eat or drink much because I just felt so sick and exhausted. I was also having a lot of abdominal pain similar to what I having before my surgery. I was so scared that there was already more scar tissue. When we were home I had noticed a couple things that made me wonder if I already had another fistula. A fistula is an abnormal connection between the bowel and something else-another organ, another part of bowel, the skin, etc. During my surgery they found the fistula was where my bladder was connected to my bowl, which caused some air to escape through the urethra. This was happening again. I remember when my bladder was scarred to my bowel in Twin almost 2 years ago, I had had surgery 3 weeks prior where there were no issues with the bladder, and it wasn't connected to anything. So in my mind, it could happen in 3 weeks. The surgeon thought it was pretty unlikely that that was the case, but it's still pretty strange to me, and makes me wonder why I am passing air again.
Anyway, she said I should go to the ER. We were kind of surprised and weren't sure that was necessary, but we went anyway. It was about 11 am when we got there. It was kind of nice sitting there waiting WITHOUT bawling my eyes out. I was uncomfortable, but I wasn't in unbearable pain. When we got triaged, the nurse seemed to think I was the most acute person waiting, and bumped me up so we got taken back pretty soon after that. She also game me some nausea medicine while were still waiting to be taken back. Don't know why that's never happened the other times we've visited the ER, but oh well. To make a long story short, we ended up being there till about 6 pm that night and then were sent home. They found that I did have a UTI. Probably from having the catheter in for 2 weeks. I was really dehydrated so I got a lot of fluids. They also did a CT scan, which took FOREVER, because the doctor ordered oral contrast (recommended by my surgeon) and was very clear to us that that was what he wanted. No one ever brought any and I finally got the nurse to come in so I could ask her about it, and she said the order didn't say oral contrast. So they took me to do the scan, but the people there decided to check with doctor, who said yes, I did need oral contrast, so I had to go back to my room and drink the stuff, which took an hour or so. And then we had to go through the whole process again, and then wait for the results. Basically, we did A LOT of waiting that day. They gave me phenergan for nausea, which just zones me out, so we both just slept while we were waiting.
Anyway, the scan said there was inflammation, indicating "active Crohn's disease." This really surprised me, because there hasn't been inflammation or active Crohn's found in like 3 years. On every scan, scope, and surgery, there hasn't been any. My problems have all been with scar tissue, fistulas, and things not being in the right place. So the doctor called my surgeon who looked and said the inflammation was right along the suture line from the surgery, which indicated "post surgical changes," not active Crohn's. She said it couldn't be Crohn's because there wasn't any during the surgery. Basically, she was saying that things were still healing inside and that that was where the pain was coming from. That was kind of a relief that they didn't think it was scar tissue. So I went home and rested the rest of the weekend, and was feeling better by the time I went back to work the next Tuesday. I got ahold of the doctor that day and she said lets start the TPN again. I had lost about 4 pounds so she said lets try 2 more weeks. I did better during that time. About when I finished the antibiotic for the UTI, the ER called me and said that they got the culture back and it grew out 2 different bacterias. The one I had been on only covered one bacteria, so I had to take another antibiotic after that. About when I finished that, I had to get another antibiotic for a sinus infection. I think my upper respiratory stuff from the week before didn't fully go away, and I woke up one day with a bad sinus headache. Sorry that still was kind of a long story!
But as far as my stomach was concerned, I was doing good during that time. I had an appointment with my GI on the 13th. He had wanted to see me about a month after my surgery, and was pleasantly surprised at how well I was doing. When I had seen my rheumatologist in December, she told me to ask him if we could switch to Cimzia instead of Humira. I didn't really need it anymore for the fistula, since the surgery "supposedly" took care of that. The RA doctor wanted to try it because I took it a couple of years ago before I ended up getting really sick, and noticed that it helped my joints. He was ok with that. He seemed to think it was possible that I DO have a fistula, but said Cimzia should probably help it. Since the main issue at the moment was my joints, he thought it would be fine to switch. I just hope it really does work.
One week later, the 20th, I had an appointment with my rheumatologist, who gave me a couple more steroid shots in the fingers that were bothering me the most. We also decided for sure to start the Cimzia. I also got a pneumonia vaccine since everyone has been telling me I should get it since I take immonosuppressants. She really recommended it, so they gave it to me in their office. She also talked to me about an anti-inflammatory diet. She said that most of her patients who avoid gluten and sugar see a difference in how they feel. Some will feel their hands swell up and get stiff as soon as they eat these things. I have thought about changing my diet before, but have never made the jump to do it. We are going to try it and see if it makes a difference. Could help my stomach too. That appointment was at 8:30 in the morning, and I went right home and went back to bed until my appointment with surgeon that afternoon. I felt really crummy. At the appointment she said pretty much that I needed to see my GI doctor for follow up for other things. As far as the surgery went, it was all healed and everything. She wanted me to come off the TPN because my liver labs were elevated and I was perfectly fine with that. Even though I felt pretty awful that day I saw her, I really wanted to be off of TPN. We decided to keep the PICC line in for a week or two, to make sure that I was doing ok.
That whole week I just didn't feel well again. I felt sick every time I ate. I had pain every night and every morning. The next Sunday I only went to the last hour of church, so I could play the piano for Relief Society. The next day I literally could barely get out of bed. I had also lost 5# in the last week. My GI doctor had made me promise to let him know if I was not doing good, so I called his nurse and told her what was going on. Dr. Goodell wanted me back on TPN (ugh!) and ordered some fluids, which the infusion company just came to my house and did that day.
That night (Tuesday, the 28th), poor Chris was so sick, and was throwing up all night and the next morning. I woke up feeling better, but still pretty worn out. I was scared of getting what Chris had, but felt so bad for him. I called in sick and luckily someone could work for me. (I know, I sound like the worst employee ever!) Chris was throwing up till about 11 that morning. We both slept on and off until then. I would get up when he would, but I felt pretty helpless. He kept saying that now he knew what I felt like all the time, and I told him now I knew what he felt like! He is always saying that he wishes there was more he could do for me. We both laid around all day and Chris slept a lot. I was able to go to work the rest of the week and Chris felt quite a bit better the next day, and was back to normal by Thursday.
I had an appointment with my GI again that Friday, (the 31st) since I hadn't been doing well. He said he really wanted to get me feeling better and gaining some weight again. He said we could try TPN again for 2-4 more weeks. He wants me to try the Cimzia and see if it helps me. He is afraid that I do have another fistula. He says I might have to see the urologist in the future to figure that out. Also wants me to do a small bowel follow through study to see how much small intestine I actually have left. I had 20 cm removed during the most recent surgery, which he wasn't very happy about. It would be interesting to know how much is really there. I have had a lot of problems with more liquid output since the surgery, I think things are just going through me really fast.
He also said he wanted to check my iron because my H&H has been low since my surgery and not getting any better, in fact getting a tiny bit worse. He said it would not improve if my iron levels were low. Turns out they were, so this week I have to get 5 iron infusions, and then they will check the levels again. They have to be given 5 days in a row I guess. The first one will be at the hospital because there is a high risk that you could have an allergic reaction, and the rest I can do at home with the infusion company, but a nurse will have to stay with me the whole time. I am hoping this gives me some more energy! I have enough TPN for a few days, but once I use it, I want to try going off of it again, or at least decreasing it. I have felt really good while on it, with only feeling bad a couple of times in the last week. I guess it's a good thing I still have this PICC line!
Whew! A lot has happened in the last month. That was really long but I am not really that good at condensing my posts. :) Hopefully I continue to feel good!
Here are a few pics of us recently. The first one is at a game we went to one night. The rest are of the trees here in when they get all frosted and white. So pretty. The pictures don't do it justice.
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One Dose Too Many
February 21, 2014
Well last week was quite the week, with not one, but TWO ER visits. That's right, I am just that cool. I've been anemic since my surgery. They gave me a blood transfusion in the hospital, but it has not been improving since, and in fact has been decreasing a tiny bit every week. So my GI doctor checked my actual iron labs, and they were low. He ordered 5 iron infusions.
I received the first one at the hospital because iron can cause allergic reactions, which are more likely to happen during the first and last infusions. It went fine, so we did the 2nd one the next day at my house with a nurse from the infusion company I get my TPN through. We got through the whole infusion, which took about an hour, and then she was running some fluids when I scratched my arm and it felt like it was on fire. Immediately both my arms were tingling and burning. Then I took a deep breath and there was a severe pang in my lower back. My hands started to swell up and I then I suddenly felt extremely nauseous. The nurse gave me some IV benedryl and we waited a couple minutes but everything was getting worse. She called the pharmacist, who told her to give me more benedryl, and said we should call 911. It became really hard to swallow and I was really afraid my throat was going to actually close up. We live about 4 minutes from the hospital so the ambulance was there really quick. Actually some firemen showed up first. They were checking my vitals and my oxygen stats were fine, it was just very painful to breath and so my breathing was very shallow. Well, just my luck, when we got to the hospital they said every ER bed was full. I told the paramedics that I was now having chest pain that was getting worse. They told the nurses who still said they didn't have anywhere for me to go so they put me in a wheelchair and made me sit in the waiting room! I was crying by this point, which wasn't helping any. My hands were now so swollen I couldn't straighten my fingers and you couldn't see my knuckles. My feet were swelling up too. I was so upset. Couldn't they have put me in the hall and given me something? The whole way there I just kept thinking that I at least this time I wouldn't have to wait in the waiting room for forever. We only ended up waiting for about 15 or 20 minutes when they took me back. The doctor basically said he didn't know much about iron reactions so he was going to call my GI doctor. We didn't see him again for 3 more hours. Eventually I was able to get something for pain and nausea. I finally used the call light and asked the nurse what the deal was, and she got the doctor to come in who said he hadn't forgotten about me (um not so sure about that). He said my symptoms were pretty common and that if I was feeling better I could go home. Well I was so tired of being there and them not doing anything I wanted to leave more than anything. I literally crawled into bed and we didn't do TPN that night. I made it to work the next day, but my legs felt like jello and I couldn't wear my contacts because my eyes were itchy and watery and felt swollen. It was a long day and I had to work almost 12 hours. I was so exhausted.
It's hard to tell from the pic how swollen my hands were, but they both were, especially the right hand.
We didn't do an infusion the next day, Wednesday, but we did one on Thursday. On Wednesday they had me take some prednisone, claritan, and zantac (which apparently has some antihistamine in it). I went to the infusion company's office to have it so that other nurses and pharmacists would be present. They gave me IV steroids and benedryl 30 minutes before the infusion and ran fluids at the same time. Well we made it through the whole infusion once again. I was feeling fine when the nurse noticed that my chest was all red. Within literally the next minute my arms started turning red and burning/itching again. Little tiny bumps started to form on my arms, and as more time went by, they turned into huge half-dollar sized welts. My hand and feet were swelling again, and I started to get the pangs of pain in my back and chest when I breathed. They gave me another dose of benedryl but I wasn't improving so they told us we needed to go the ER again. I was so disappointed. I didn't feel as bad as I had the first time (probably because of the premeds) so I was just really hoping it would start to get better. Their office is in Spokane Valley, so we went to the Valley hospital. We were only 5 minutes away, and 25 minutes away from Sacred Heart, the one we usually go to. By the time we got there, my right arm was one huge welt, all red and swollen, and I was limping when we walked in because my feet were so swollen it felt like I was walking on balls. I sat down in a chair for about 30 seconds while Chris was filling a form about what was wrong. The nurse had called and told them we were coming too. They brought me right up and took my vitals. Then took me right into a room with a PA and a nurse who looked me over and got me right back to a room. They didn't even care about what meds I was taking, they told Chris to give the list to them later. When we got into the room one nurse told another nurse to hurry and get the doctor. He came in and acted like he knew way more than the doctor at Sacred Heart. They immediately gave me more benedryl, steroids, and pepcid, which has antihistamine in it. The doctor said my airways were open so my oxygen stats were good and I didn't need an epi pen. But he said that didn't mean I wasn't having difficulty breathing. We noticed a short time later that my right arm looked almost back to normal and my left arm was much better too! The breathing pain was the last thing to get better but it improved pretty quickly. They also gave me stuff for the pain and nausea. They had us stick around for awhile just to make sure I was still improving and doing ok. When we left we had only been there about 3 or 31/2 hours and I was feeling much better. The next day was much better too, I wasn't feeling the effects of it anymore. They ER doctor had me take some prednisone for 3 days afterwards though, because he said that sometimes it can relapse and come back randomly in the next day or two.
This pic was taken once things had gotten a lot better. You can see the side of my hand that is all swollen, and the red patches on my left arm-what was left of the welts. My right pinky was huge!
I also think the Cimzia is actually helping my hands..lets hope it keeps getting better! I hate doing the shots. Its harder because there's a huge long needle instead of a pen like the Humira was, but it's worth it.
All for now...hopefully the next post is not about the hospital!
______________________________________________________No more PICC LINE!
3/29/14
And drumroll......I got my PICC line out!! No more TPN! Woo hoo! This time we tapered off of it slowly and I think my body handled that better than just stopping it cold turkey. We stopped it completely 3 weeks ago. It was supposed to be taken out after 2 weeks, but I lost 4 pounds in one week, and my GI doctor was out of town, so no one wanted to pull it till he got back. I maintained my weight after that, so it was pulled on Wednesday. It feels really good to not have to shower with a plastic glove on, and flush it with saline and heparin every night.
I also saw my GI doctor on Wednesday and we had a good visit. He was happy with my weight. He thinks it would be good if I got a bone density scan, since it has been a couple years. We want to make sure that I am absorbing the calcium I take. He does want me to get a Small Bowel Follow Thru done to check for a fistula and see how much intestine I have left. I am also going to see the urologist to check for the fistula. I'm hoping there really isn't anything there. He also says he doesn't think we should try to have a baby yet. He is afraid I would be sick, lose weight, and end up on TPN again. :( We are going to start the adoption process. I want a baby so bad!
Since we are talking about my
health, I will also say that the Cimzia is helping my joints. When I saw the rheumatologist a couple weeks ago, only one of my fingers was swollen, and I was finally able to get my wedding ring off!
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Praying for a Baby
10/08/14
Right after we moved, I got an appointment with a primary care doctor here. He wanted me to see some other doctors before we go ahead and start trying. I saw an OB in Roosevelt, and we talked about medications that I would need to stop taking. And I was perfectly ok with that, because they were mostly meds that don't help me anymore. Then I had an appointment with a GI doctor in Salt Lake on Friday. I was really looking forward to this appointment and felt like it took forever, but it finally came. I really liked the doctor. I was hoping that she would just say "Yeah, have a baby, I'll help you if you get sick." But she wanted me to see a Urologist and a Maternal Fetal Medicine doctor (High Risk Pregnancy doctor) before hand. She also had me get blood drawn and it showed that I'm anemic and low in Vitamin D. I have slacked off on taking my vitamins lately, so I will do better. I have an appointment on the 15th with the Urologist, to have a scope of my bladder and make sure they still can't find a fistula. We wouldn't want to figure that out while I was pregnant, and need surgery. My doctor's in Spokane talked about the possibility of doing TPN while I am pregnant, so we talked about crossing that bridge when we get there. Hopefully I won't be that sick, and we won't have to go there. The MFM doctor will be able to tell us if there is a weight goal, and the risks of pregnancy and everything. I did lose 10 pounds when we moved, and I don't know why, probably from the stress of packing and everything. I wish that wouldn't have happened so the chances of us getting pregnant fast would be better. The appointment with the MFM doctor is not he 27th, so I guess I can wait 20 more days, right?
We haven't ruled out adoption. If we heard of a baby someone was giving up, and could adopt them without going through an agency, then we would totally do that. I do have a name of a lady to call who has adopted a lot of children, and knows how to do it without paying an arm and a leg, so I am going to call and pick her brain.
Sometimes I get really emotional when we are around kids. I just started crying spontaneously a couple times, when we were on Temple Square, just seeing cute kids and babies everywhere. I have also been known to cry at church, or walking through the baby section at the store. We want a baby so bad, so please pray for us that we will be able to start our family soon. And if you hear of any babies needing a mommy and daddy, let us know!
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