So it's not the best picture but boy do I love them with all my heart. It's never a dull moment in this house with these three and boy do they drive me crazy on most days, but it's moments like this where at the end of a busy or just long day from not feeling well that melt my heart.
As as you can already see who's the Mommas boy is, Ace has been with us I guess you can say since near the beginning of my illness so pretty much we almost would call him my own personal therapy dog. Everytime I'm not feeling well, having a panic attack, or just a overwhelming day. He's always there, he doesn't leave my side. He comes and gives me kisses and will sit with me and just have me hold him. He's my baby boy. Angel hasnt quite figured it all out yet, but since this last hospital stay. I think something finally clicked where she figured out something wasn't right. She's a pretty big puller and jumper she loves people's attention. But when I came home from the hospital I noticed with me she will listen more on not pulling if I say don't pull and she hasn't jumped on me either. I think she figured out if I tell her to sit I will come to her and she gets pretty excited about it. Jakes the the newbie so he doesn't understand it all yet but he does keep me and the other two pretty busy and on our toes. I also think ace is trying to teach him young on you don't jump on mommy.
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So I spent the whole day cleaning. I don't know if it's the weather or the time going forwards that's throwing everything out of wack but man it's been one of those days. So I decided to kinda do a early spring cleaning to kinda get ahead of the game I guess you could say. It just seemed like every 5 steps forward I did with the cleaning I'm taking 10 steps back and going back over it. So the dogs got a bath today and I clipped their nails and of course Angel pulled away from me and I accidentally clipped her nail to short and she's been on a bleeding spree since at first I thought I got it to stop then she started to play with Jake so then it started bleeding again so then I bandaged her and it worked for awhile until we left to go into town then she took it off, so now she has a sock on her paw because she started to bleed again. And now everything that I've cleaned today pretty much has to be cleaned tomorrow because I have spots of blood everywhere that I just cleaned of course. Ace got into the trash. Jake thought it was funny to chew on some cardboard. The printer wanted to act funny. I didn't get to finish cleaning. Plus side atleast all the dogs smell good and the house smells good.
I would like to just take a moment and make a special post for my husband. You know even though we were together before I got sick, even after I started to get sick he stuck around not really knowing what he was taking on. After we got married my health really started to get worse and it really put the meaning of " in sickness and in health" to the test. He really truly is my best friend and my rock. Not only have I had to take on a lot with my health and how it has effected me but he has taken on a lot too as a husband and a person that he didn't sign up for. He has had to deal with the scary moments that are out of his control where he thinks he's going to loose his best friend, he's been the one there to help change the bags, hold my hand, put up with all messes. He goes to every doctors appointment. He works so hard to provide for me and our dogs and even after the long days at work he still comes home and if it's been a bad day still does whatever he can to make me feel better. He really is amazing and I couldn't of asked for a better best friend, and husband.
If your a college student or mommy, I would highly try this recipe its very easy. So I have a crockpot Mac & Cheese recipe that I have made for my husband many times plus ive made it many times for family events. Everyone says its amazing so I thought I would share it with you guys out there. If you try it at home please let me know what your opinions are.
Ingredients 16oz Elbow Macaroni ( Cooked ) 4 TB Olive Oil 2 Cans of Evaporated Milk 2 Cups Milk 2 tsp Salt 4 Cups Cheddar Cheese 2 Cups Velveeta Cheese 4 TB Melted Butter After cooking the macaroni, drain and add to the crockpot. Add olive oil and butter evenly onto the cooked macaroni. Then just add the rest of the ingredients and stir. Cook on low for 2 hours. So sorry I haven't said much so let see what's new... So as you all can read from my last post I had met with the IBD specialist and GI on Monday, and I'm if you haven't seen it already I brought my 2.5 hour binder I had put together with all of my medical history from 2015-2017 and needless to say there's so much paper work coming in and we're still finding that basically im going to need to move to a new binder. Speaking of paperwork I've been on the task of organizing all of our paperwork and also needless to say getting all the paperwork and writing things down is so time consuming compared to putting it all together but hey atleast it's getting done and will be easier for the future. When the finished project is done I'll possibly get into what I did or atleast I'll show you how pretty they look. Also, I had my follow up with my surgeon today and she agreed that we are holding off on my third surgery till when the IBD specialist thinks I'm ready. Even she agreed my luck has been crap, I'm just that unlucky 1% chance kind of girl apparently but hey we're still praying and trying to stay positive. GREAT NEWS! got my picc line out today. So that was part one of the highlight of my day and they took blood out of it before removing it so no needles sticking me. Then my husband surprised me with us watching the movie SING that I've been asking about so that was my special highlight of my night. Then this happened. just so everyone knows I can't express how much this is so true in this house. Only thing missing is the dogs on this list.
So this is what I've been up too, anyone else have anything funny or did something pretty eventful, or even a update on their health the past couple of days? So I had a appointment today with my GI and the IBD specialist and overall it was good we got answers, and have a plan. Well they said due to the abnormal inflammation they really have no way of knowing right this minute if it's Crohns, Pouchitus, or Pouchitus being autoimmune suppressed. So we're gonna being weaning me off the Predinsone and there sticking me back on the Cipro Antibiotic they wanna see if I can tolerate not being on any type of medication. If I can then once I'm off everything they'll do another flex sig and check and if it's good then I get my third surgery. If things get worse during the weaning off or after I'm off then we're gonna be changing treatment to something different. We will try Humeria or possibly something else for 6 months and see if it works if it does after 6 months then I get my third surgery. Now if that fails then I will be living with a bag for the rest of my life. So we have a ways to go but it finally kinda puts our minds at ease and my anxiety to finally have some answers and a plan . Oh and I get the picc line out this Wednesday which I'm looking forward to finally having my arm back. If anyone reading this has had the infusions before if you don't mind me asking what kind do you take and how well do you see that it works. I just wanna make sure all my bases are covered the good and bad if it fails. Since they said it's a low chance of the treatment not working and here lately I seem like a magnet of those low chances of something not working .
So I experienced going to a casino for the first time today.
Before I get into that though my weird thought of the day was what would it have been like to live in the old time movies. What made that happen you ask yourself? Well you see the casino was in WVA and the way the navigation was taking us we passed by a bunch of old grave yard one so old it reminded me of the movies the tiny squared metal fence with the trees, and walls of stone , little old towns. Just new things ive never seen before and it had me thinking like what would have life been like back then . Just my weird thought but anyways moving on to the casino. So when we talked about going to the casino in my mind I picture you know the slot machine with the pull down bar and you deal with the gold coins that shoot out kinda like the movies, as you can tell ive never been . So needless to say it was not that but it was fun, I ended up at some Wonder Woman slot machine that I liked. I was also very surprised with how cheap the food was and drinks, is that surprising to you? Just a full warning this blog will probably be pretty long and very detailed
So when my chronic illness started it literally came out of no where. I had just gotten back from a family wedding in May of 2015. I went to work like a normal day and as I was there I started to feel hot, sweaty and dizzy. Something just didn't feel right so I went to use the bathroom and noticed that I was bleeding out of my bottom. So I immediately asked to leave to go home, when I got home I called the doctors to get a appointment the next day. When I saw my primary she did a exam and put me on a two day Antibiotic that I ended up having a allergic reaction to with some swelling and the next day I was having even more bleeding and went back to the doctors, of course my doctor wasn't in and the nurses told me that if the blood was a hit and miss then wait till tomorrow to see her but if it was consistent then to go to the ER. I was still bleeding but it was a hit and miss so I waited to see my doctor, when I saw her she recommended that I go see a GI at UVA. At first they had a hard time diagnosing me because they never expected to see Inflammatory Bowel Disease ( IBD ) Ulcerative Colitis ( UC ) in someone at my age. So finally after multiple colonoscopy's and a MRI it was confirmed that I had IBD UC in my colon and large intestine. I then found out that I also had C-Diff which was also the cause of the diarrhea and pain I was having. I battled with C-Diff more than once and at months at a time. Its not something easy if any of you know about it then you know what I mean when I say bleach is your best friend and only way to kill this stuff. For my UC they tried three different types of oral medications and I was on all sorts of vitamins because my body wasn't getting the nutrients it needed. The nutritionist said that my B12 was so bad that something that bad should of happened over my life time not within under a year. I couldn't keep food down, I weighed about 125 before I got sick and the amount of weight I had lost was so significantly low I weighed as low as 71 pounds. My whole body ached from the weight loss, and from how many times I was going a day was roughly 20-30 times, the blood loss where I had become anemic, for the most part it made you want to stay in bed and just cry because the pain seemed never ending. All three oral medications didn't work because of the gag reflex that I have so they couldn't properly see how much actual medication I was getting into my system, so we eventually had to switch to the infusion of Remicade. At first all I could do was hope that this was the answer and I thought it was starting to possibly work because there were days where I felt a little better and not in so much pain. After months of taking this it was just another failure. I woke up one morning to my face feeling like it was on fire and swelling and I thought I was having a allergic reaction to a cream antibiotic I put on my face when it turned out to be cellulitis in my tissue on my face from the Remicade. My husband was at work and I had told my mother in law to go ahead to work (this was before we found out what it was) and I had tried benedryl for the swelling. I was home alone and I just got to the point where I knew I had to go to the ER thankfully my dad wasn't to far away. So after my face was on fire, swelling, throwing up, dizziness, crapping on myself about two times and showering, sleepy because of the benedryl we were finally heading to the ER my dad had to pretty much carry me and put me in the car. We got to the hospital and they said that couple hours later and there's no way I would have made it . That's when we found out I had cellulitis. My husband rushed to the hospital and basically made it there before we did. So as you can imagine after that we stopped the Remicade. So here I am basically running out of options before surgery but they wanted to try one last thing before surgery. We tried a fecal transplant, and needless to say that failed too, my blood count spike and my body was going septic. So into surgery I went and afterwards my surgeon had taken a picture of my colon and showed where I had 10 holes in my colon from the ulcers and said that I had toxic megacolon. So for a year close to two I've been living with a illostomy and there's no real words to describe the roller coaster it's been living with one. I'm beyond blessed for having my bag it's giving me a chance to live a life but it's not easy also living with a bag. When I first saw my stoma I wanted to learn how to change my bag and deal with it but it was also so new to me seeing something strange at the time sticking outside my body I felt like I was going to pass out so my husband had to help me through a lot of dealing with my bag and he still does at times. You can get very dehydrated and because of that you can have bad days where it's hard to accomplish anything or do anything. You feel weak and tired constantly. By now you can say we've made the 5th floor of the hospital our second home we knew all the nurses and still do. So here's the shocker at this point I was told I also shouldn't have to worry about getting C-Diff again because you know I had no colon or large intestine, so I shouldn't of been able to get it in my bag . Well I'm that unlucky 1% that gets the C-Diff in the bag so that made me even more dehydrated and waiting the months before I could get the reconstruction surgery for my j-pouch. Eventually I was cleared and thankfully each time I've been tested it's been negative. So here recently I had my second surgery for the reconstruction for the J-Pouch and it's also for the meantime diverted to my bag so I could heal from the surgery. And remember how I said I'm that unlucky 1% well it happened again but this time I went into the hospital for servere dehydration, they ended up telling my that my small bowel has something called Cryptitis, oh and that I have Pouchitus too. So it hard to believe that even after all this my journey with this illness is still not over . We've been to the hospital over 12 plus times, I go to the same room on the 5th floor, know the routine down by heart, and all the nurses know me and my husband with no hesitation. So this is my story for the most part of my chronic illness, im sure there will be more to come. So ive been starring at my computer what to really post about for my first actual blog post and I really dont have a clue on where to start. So I guess I could tell you a little more about myself then what im sure youve possibly already have read in the about. So basically im a small town girl who moved from Maryland to Virginia for college to get my Veteninary Technician License because I love working with animals but then out of no where my health kinda turned for the worse. My husband and I pretty much have known eachother for what feels like forever, we grew up together so I guess you can say weve got that cheesy love story down. Even though weve known eachother pretty much our whole lives weve recently got married young of course as everyone would say its been 1 year going on 2. We have three fur babies since weve been trying to hold off on kids till we figure out my health situation. Theres our first fur baby Ace hes been with us the longest and has got to be the sweetest understanding dog about alot that goes on with me, then theres angel who is still new to the family we got her when we moved into our house, and then the newest addition Jake he came to us the day before valntines day and hes the puppy of them all.
So I've been having blogging on my brain for awhile now just to test it out and see what happens. So this is my first time setting this up and I honestly have no idea if I've done this right and if anyone can see this , so I guess if one person does say something then I guess I did something right. Well let's find out more to come.
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