Hello everyone! I'm back, sorry for the wait. The past few weeks have been a struggle since the surgery, and it's a struggle to even be typing this. It's been a while (almost a month) so I'm going to do my best to update you not only on what's been going on medically but emotionally as well.
Surgery (which was January 29th) went well. All of my doctors, nurses and techs were very nice. I was nervous, but both my parents were there and that was a big help to have them there comfort me. Surgery happened a hour later than scheduled, but went smoothly. I have been watching Grey's Anatomy the past few months on Netflix (I like it because it makes hospitals seem more exciting than they actually are) so it was kinda cool to see my name on the OR board and such. I thought that the actual surgery would be the worst part but boy was I wrong.
I woke up after the surgery and the first words out of my mouth were "ouch". No more than a few seconds later, I was bawling. I woke up in major pain and haven't not been in pain since I woke up post surgery. They called my parents shortly after I woke up and then began pushing pain meds through my IV to see if they would help. They tried two lower level pain meds before they tried morphine, and the morphine still did nothing-I was in exrucating pain. My legs also hurt & I was unable to move them. My face was extremely itchy yet it hurt too bad to lift my arms so I couldn't even itch my face. Shoutout to my sweet mama who itched my face whenever I asked her too. My throat was dry and hurt any time I tried to talk due to the intibation tube I had had stuck down my throat during surgery. After a hour or so in the post op recovery and a chest x-ray to make sure the port was implanted correctly, with no serious complications, we were told it was time to go home. (We had to be at the hospital at 6 and left the hospital around 4:30, if this gives you some sort of time table.)
I was in too much pain to change back into the clothes I had came into the hospital with on, so I stayed in my hospital gown. As my parents helped me get out of bed and into the wheelchair, I screamed louder than I had before-it hurt SO bad. I can't even express how bad it hurt and it makes me cringe just thinking about it. Next, I was wheeled out to our car. I had to curl up into a ball so it would hurt less but it still hurt and I sobbed the whole time. Every bump to get into the elevator, or door entry, or crack in the tile or brick pavement hurt my side even more. Getting into the car was another painful challenge, as was driving home. Every pot hole, every speed bump, every curve, every stop-hurt.
Once we were home, the next challenge was getting me into my bed. Once we had gotten me from the car to the stairs inside our house in my wheelchair (anytime we have to use the wheelchair in our house its a difficult task-our house is not handi cap asscesiable) we had to make a plan to get me up the stairs (I loathe those stairs I hate them I hate them I hate them) without putting me in more pain than I already was. Normally my dad would just carry me up the stairs, but in this instance doing so would press my incisions against my dad's back make me hurt more so that wasn't option. What we decided on was for me to sit in a chair and my parents to carry me up the stairs and to my room in the chair. Both my parents have bad backs and I could tell from the looks on their faces that doing this wasn't an easy task, but at last we were in my bed.
I was hungry as I hadn't been able to eat or drink anything since midnight the night before. While I ate pasta with butter (only certain foods for the first two days) my mom went to get my pain meds. I was thankful to have them but they only took the pain down half a point. (Often at hospitals they'll ask you to rate your pain on a 1-10 scale with 1 being no pain and 10 being the worst pain of your life.) After I ate and took my meds, I knocked out until the next morning. I was exhausted. A big thank you to all of you who helped me and my family on the difficult day of the surgery-from people taking the boys to and from school, to a friend bringing my parents lunch at the hospital, to the three (yes three!) dinners we had brought to us that night and the countless text messages, tweets, Instagram posts and comments, Facebook status comments (I still haven't finished getting back to everyone who contacted me, I promise I will in time!) to the endless prayers, we couldn't have gotten through that tough day without the wonderful community we are blessed with. Thank you.
You should be able to return to a full school schedule on Monday, they said. Your pain level will dramatically decrease after a week, they said. It's a minor surgery it's no big deal, they said. The recovery is nothing, they said. None of those statements held true for me. Even with the surgery being almost a month ago, I am still in extreme pain. I wasn't able to do a normal school schedule for three and a half weeks. I couldn't lift my left arm at all until this week and still I'm only able to lift it thigh level. I've spent almost every minute of the past month in bed, as any change in movement causes more pain. I'm not able to walk straight, I'm up to probably 75 degrees which I suppose is an improvement from the 45 degree angle I was walking at when the first week-I seriously looked like a grandma. I still have to have one of my parents assist me whenever I want to walk anywhere and have help in the bathroom. Once I was able to bathe, it was one of the most exhausting and painful activities I have done to date, even with my mom bathing me and her working swiftly. I need help reaching most of the items in my room and for three weeks my parents had to put my pills in my mouth for me. Since the port is next to my lung, it hurts to breathe deeply, talk loudly, cough, laugh or scream. It's still difficult to move and painful to change clothes and up until this past weekend I had just worn hospital gowns. (We washed them-don't worry.) Even now, I just wear my pajama's-regular clothes are too much.
The incision sites look great, are healing well and my body didn't reject the port-praise Him! It was swollen and bruised at first-I didn't look at it for the first two weeks because I was scared of what it would look like. Since the two week mark, I check it often and while it looks strange it doesn't look terrible. I'm nervous about prom dress shopping with how it'll look under certain fabrics but am trying to stay positive that I'll find a dress that I love and feel confident in. Swim suit season will be a big test of my self esteem with the port, as it'll be fully visible but we'll cross that bridge when we get there. More than anything, I'm happy the port is in and the incisions are healing well.
Although a few offered, I didn't want to see any of my friends for the first two weeks post op-I was that miserable and in that much pain. If that doesn't tell you how bad I was feeling then I don't know what does. I only texted my closest circle for the first two weeks (and still texted them sparingly) because I didn't have the energy to talk to any one else. I wasn't on any social network for two weeks, I was simply sleeping all the time and didn't have the desire to do so. I've slowly been getting back into being in contact with the world around me but am still not at full strength.
For some crazy reason (God's grace & the blessing of the Olympics being on-I'm Olympic obsessed!) I really wasn't depressed at all, despite spending three straight weeks in the upstairs of my house with few visitors and in crazy amounts of pain. The depression didn't hit me until three weeks post op, but it hit hard. I've missed out on several social opportunities and fun things to do with my friends. Prom is approaching and I'm unable to go anywhere to dress shop. I haven't seen many of my friends (which I don't completely place all the blame on them I mean what teenager wants to spend their Friday night with me laying in bed doing nothing? Oh and only in hour intervals because I get too tired if anyone stays longer than that...) but regardless I miss my friends. We tried multiple pain meds but the only one that has worked is morphine. I'm semi-functional on morphine (despite the drowsiness it causes me) but the problem with morphine is that it's addictive. What am I supposed to do when the no refill prescription runs out? I'm terrified of how awful the withdrawls are going to be. Also. tonight in between doses I had to go to the bathroom and I was in tremendous pain walking there and back-crying and screaming as much as I could without the port site hurting even more. Am I going to be in that much pain when I run out of morphine? Something isn't right. I'm tired of waiting to get better. There's no hope, no cure, no solution and just talking about that almost makes me break down to tears. I'm tired of my illness ruining my life and running my life, I want to live my life the want I want to-not the way my illness makes me.
The one time I got out of the house in the last month was on February 15th to go to the ER (fits my life pretty perfectly don't you think?). I had had blood in my urine Friday night & Saturday morning and since it was the weekend and he wasn't in office, Dr. Patel wanted us to go to the ER to make sure it wasn't anything serious. Getting there was a mess and horrifying and painful and not fun but we did it, by some small miracle. We really don't like going to the ER because since they not educated on what my condition is whatsoever (when we tell them what I have it's the first they hear of it) they rule out that I'm not dying, then tell me I'm either constipated or crazy and send me home. Back to the 15th, after several hours of testing, they decided it was nothing serious or life threatening. Besides making sure I wasn't dying, it felt like a total waste of time, money and my precious energy. I was starting to make some small amounts of improvement but going to the ER set me back a week, which was very frustrating. While I was there, they wanted to draw blood for tests and start fluids so I said "oh great! You can just access my port." But no. The doctor said that some of the tests she was running the blood couldn't be drawn from a port, they had to do a regular IV (by some miracle they found a vein, probably because I hadn't had an IV since the surgery). But I was pretty darn iirritated, wasn't one of the perks of getting an IV is that I wouldn't have to get any more IV's?! Oh well.
Since the surgery, my stomach problems have continued. I can only eat a fruit bar for a breakfast, then a small lunch (think half a piece of ham, handful of green beans, handful of carrots) and then a smoothie for dinner without throwing up. I know that's not enough nutrition, but if I eat anymore I'll throw it up. I'm also limited as to what foods I eat (as if being gluten free and dairy free wasn't enough) as certain foods agitate my stomach more than others. Besides the port pain, the stomach pain has also continued as well as other stomach issues. We think that these issues along with the reasons for my last two ER visits-something is wrong with my insides. Sadly, we still have two months longer to wait until we can get into the pediatric GI doctor. My mom tried to get me into my parents GI doctor but they only see adults. You would think being in the 7th largest city there would be more pediatric specialists, but no. This appointment can't come soon enough. What I'm dealing with is enough I really don't need stomach issues on top of it.
What's coming up you may ask? Well this week we're going to the doctor to get my port flushed for the first time (ports must be flushed monthly to keep the vein open and check the blood flow) and I'm also going to take the ACT. (yes, I can't even get out of bed but I'm going to take the ACT this week...what) I'll try (try) to post about those things this week. My two year gluten free and dairy free anniversary was Friday so I'm hoping to do a post about that soon-the challenges of being gluten dairy free, things I've discovered that make being gluten dairy free easier, as well as how to be a good friend to someone with dietary restrictions. Also, the fundraiser support bracelets that my best friend Marissa ordered are in and they look great! She's selling them for $4. If you're interested in one, either contact her or me or any of my family members and we can get you in touch with her. Thanks for sticking with me, being patient and continuing to pray!
"The Lord is good, a strong refuge when trouble comes. He is close to those who trust in Him." -Nahum 1:7
