Cheriz: My life with Cystic Fibrosis

Good News: A Sigh of Relief. Finally. I had my eye surgery last week and I had my post- operation follow up appointment yesterday. All is going perfect with my eyes! I've been needing this surgery done for the last year, but had to cancel twice due to my getting sick right before surgery. I had Strabismus surgery. Basically my eyes (mostly the right eye) wonder and can't follow along together. My eyes didn't work as a pair and my left eye took over my sight. So I had depth perception problems, bad night vision, and stopped reading books about a year ago. I was so happy that Wednesday I got to follow through with the surgery! I have one more post operation surgery appointment next month, but Doc said they look perfect! Well, technically they are still bloody (in the surgery they snip the white part/muscles and stitch them tighter), but I love my bloody eyes more than my old ones and can't wait to read the stack of books waiting for me!!!! My checklist is finally ...

I Spy With Silly Eye: "Silly eye" is an understatement. As you all know (probably) I have mild cerebral palsy, which affects my right side.  I was diagnosed at around age 2-3. I had glasses since I was a year old, but it wasn't until I started walking funny on the outside of my right foot and talking out of one side of my mouth that my parents knew anything was wrong. After many years of physical therapy, barely anyone could tell I even have CP. I said goodbye to my leg brace at age 10, goodbye to glasses at 12 years old, and kept getting stronger! (picture: doing physical therapy at home) I was very fortunate to have such a mild case. I still catch myself holding my arm stiff (t-rex style as I call it) and I have trouble with tying shoes, cutting food, doing buttons, etc. Sometimes my right hand just drops items, and overall my right side is super weak. I try very hard to work out and keep it's strength up, and overall it has gone pretty well.  I have no r...

Thankful for Halloween: One picture can say a lot. For example:  This picture (besides saying I just woke up) Also, say a few other things:  I have lung problems (Cystic Fibrosis) since I'm doing a vest treatment & nebulizer, It's Halloween or I have eye problems. Well, actually it's all three! I'm thankful it's Halloween, because it makes my eye patch blend in more. Why am I wearing an eye patch? I don't wear glasses or contacts, right.... Did you know that I did have glasses for many years. I had such bad eye sight that as a baby that I got my first set of (thick) glasses by 6 months old.  I had bifocals by the age of three. However, the eye problems were corrected (sort of) by age 11 and I could ditch the glasses.  Only in the last year have I noticed them coming back. Lately, they have been pretty bad. I've hit more curbs while driving and stopped driving at night all together.I keep running into things and tripping, I'm usually ac...

On a Liquid Diet, But Healing:  (stomach pics below) This week has been interesting and challenging. I had surgery on Tuesday to finally surgically fix my stomach tube hole. I updated everyone on Tuesday afternoon after I had woken up (that's when I wrote the last blog post which is below), but here is a better update. I haven't posted since then because " I went Silent for Cystic Fibrosis" and participated in a 65 hours challenge to stay unplugged from social media . It was sooo tough not logging onto facebook or tweeting anything in the last two days. I was healing and unable to do a lot, so going online would have helped time fly by, so it was bad timing. But now that the 65 hours is over I want to make sure to catch everyone up! After surgery on Tuesday I was admitted overnight, just to make sure everything was going well. They started giving me Diluadid for the pain (it wasn't too bad if comparing to my triple hernia surgery), but they wanted me to not h...

My "Bullet Hole" Fixed: Everything went smoothly and this morning went really fast. Check out my style : lol the new fashion. Pic: Taken pre-surgery I'm very excited to say my surgery is over and I'm doing quite well. I'm so excited, I've been on a liquid diet all this afternoon/evening and GUESS WHAT? No leaking, none because it's sewn shut. My surgeon did a great job and I can't wait to be done healing. Sorry if this seems a little more scattered and oddly written. I'm still on a small dose of pain meds. I'm not a big fan of pain meds considering my severe allergy to morphine. But, by feeling the pain I can gauge how fast I healing, but for today (the day of my surgery) I was told to stay on them, because of the pain coughing causes. I can cough more freely and try to clear my lungs if I take the pain medication. However, tomorrow I'm not asking for any pain meds though, since I want to be free to go home as soon as posssible. If y...

ehhhhh My Nose Buzzed:  As you know I'm having surgery on Tuesday. If you aren't sure why then  find out here!  I've talked a lot about why I had the G-tube put in during 7th grade, how it has helped me, and discussed how annoying it is that it leaks. Well, that's not really the whole picture. There's much more to this. If you count the bronchoscopies, and minor surgeries, then I've had around 15 surgical procedures. This is my 8th (for lack of a better term) major or "real" surgery. I feel like the operation board game for crying out loud!  To be honest: I understand my life will be full of operations and medical procedures. But, It's FRUSTRATING to need a surgery to fix this hole. Getting the tube taken out in June was supposed a joyous and amazing experience. I kept my weight at 106-108 for months without using my tube!!!!! I can finally say I don't need my G-tube! I was so proud and while none of that changes, it's still annoyin...

Pre-Op Appt:  I had my consultation with Doc C. (my surgeon). Yep, Doc B ( my CF Doc) and I were right. I need surgery. Oh, boy! (sarcastic voice) But, it could be worse. I could still need a G-tube. Let's catch ya up if you are new or don't know the details.  Here is the 3 link journey through my life with a stomach tube! First: Why I got it and I how I feel about it:  "Tu-be or not Tu-be" Secondly , The day I got it out:  "Amazing, Terrifying,& Disbelieving News" Lastly , my problems once it is out:  "Healing & Fighting" which led to this surgery & post... You may be a frequent reader and have read them, but just in case the links will fill you in! Okay, so what's the problem? Why do I have to have the surgery. Well, #1 I've lost lots of weight since it came out.  I'm a 100.0 lbs (almost below triple digits). I worked soo hard in college to get into the 100s, I think I will cry if I drop to the 90s. I'm bu...

Am I Bored or Am I Busy? Okay, it's been over a week since my last blog entry, sorry. Moving on August 1st, unpacking, getting settled, and focusing on the changes. So many big news, changes, and lots to work on lately. So I'm going to take this time to tell you about the 5 big areas of my life right now! So you can understand exactly where I am and get a good update! Here are the 5 Areas: Healing, Settling in, Clinical Trials, Friend Follow-ups, Blog/CF2 1. Healing I had my stomach tube taken out On June 20th! It was so exciting, but a little nerve racking how it happened! (read about my Journey with my G-Tube:  Here  and then read how it was taken Here too! ) I'm very glad to have it out, don't get me wrong...But, it's been a long road healing. It's still not healed. It still leaks, so I have to careful with what I eat. Anything acidic burns and anything with too much liquid just comes out the hole. So I have to always have gauze over it. I went back ...

The NEWS! I had another appointment today at 9:30. I came back last night on the train to go to it. I've been really looking forward to this day for a while. I've had a lot of setbacks with surgeries and procedures in the past. So I was really nervous that my Surgen. Doc C. would push the stomach tube removal surgery back a few weeks. My plan was to get it out first week of July. I've had the stomach tube in since 1997 ( Read all about my Stomach Journey Here) . Needless to say, I was super excited to talk to the surgeon about getting it out. I know some patients in the past just had them taken out and their holes closed up quickly on their own. However, this thought freaked me out whenever it entered my mind. I've had my g-tube in for 15 years, so sewing it shut will be my only option right? Wrong... Cuz guess what happened today??? My surgeon took out my G-tube... Here is me right afterwards in the car. Don't worry I didn't post a picture of the actual ...

All the New Things: Since my surgery on June 4th I haven't had a stomach feeding pump and unfortunately my weight took a hit. I'm stuck at 90 lbs. I've gotten my new insurance and my new pharmacy to work together and I should be receiving my NEW pump next week. I will have to start off slow (not doing all 4 cans a night) to get my stomach used to it again. And it will be hard considering I get off work some nights at midnight then go back to work the next morning at my 2nd job. But if I speed it up at night I should be able to do all four cans and 1,250 calories during the night. The upsetting part is more that I can't gain the weight without the feeding. I always had the goal of getting rid of my stomach tube. I wanted it to be before I was 30. Well, I now have realized in the last month dropping 10 lbs. that its not gonna happen. Its going to be a permanent part of me. Also, new... I have been working a new 2nd job to save money so Andrew and I can move to Chica...

Post Surgery Appt: As you prolly know, I had Laparoscopic Triple Hernia Surgery last Tuesday. Here was a picture of me devouring a piece of bread so I could go home afterward the surgery (4 hours post surgery and 20 mins post waking up from recovery). I was ready to go home! Today I had my post surgery check up. He said everything in the surgery went well and besides the finding the 3rd hernia there were no surprises. He pointed out where the staples/stitches (they are holding the mesh in place) are in me. I have two on each side at the end of the mesh (so 4 on top) and two down farther in my groin. Apparently, I just have one huge piece of mesh that runs the width and length of my whole abdomen/groin area. Bahaha. I am Inspector Gadget after all. He said a few more weeks before I can lift stuff or exercise. Also, he said the area where the staples are will hurt when bending or twisting. However, I only notice really when I twist or turn too fast. Overall, it was a nice appoint...

Surgery: I was sick all last weekend and didn't think Doc would go through with my surgery. However, we did. Dr. C (my surgeon) said it went well, the only surprise was that, I had 3 hernias instead of two that they had to repair. Which means I had more mesh put in my abdomen and groin muscle wall. To be honest I was moving around fine, but I cough a lot. Which means the mesh digs into me and that can hurt if I get into a coughing fit. I had the surgery Tuesday.  Surgeries tend to make my intestines block up ( I know TMI, but I know many CFers deal with this, especially after surgeries). So Wednesday and Thursday were not ideal after surgery, but Andrew and I had a Downton Abbey Marathon. We are hooked. Mom had bought me season 1 for Easter and I got Season 2 from Ada for my Birthday! So even though those days were rough, I still enjoyed them. Luckily, by Friday Night I was starting to feel better, and yesterday I even got to go to Wal-Mart. I know exciting right? lol. Today,...

I should listen more, but I hate always been told what to do: Epic Fail: Everyone always thinks they know best for me and yes, sometimes they have good opinions. However, I don't always listen. Why? don't ask. I have no clue. on Tues: My doc told me to bump up my meds and work at getting my health optimal for surgery. But, basically this week I have failed at doing meds. Like some days did none at all.  I have to restart my promise of all my meds! I'm very thankful so many friends have joined the CF Walk, have fundraised or donated! It means a lot. I know that everyone who donates deserves to see me do all my meds and get healthy. I'm sorry to have failed at the promise. But I will restart and recount those days :-) This week I've had some friends with some issues, even a couple surgeries. So it was a busy week.  And I have been not doing so great medically, which is why I haven't done them. When I'm tired and don't feel good, I just don't d...

One more week! I've had many surgeries throughout my life ( 14 ish I believe). Most due to intestinal twisting and complications. I've had a couple mediports ( a disc, that is an automatic IV Line in my chest), stomach tube, etc. Not a big deal, right? Just another surgery. Here is an article about the surgery they are doing on me too: Read It Here!  - Double Inguinal Hernia Repair. Not a big deal, Right... totally. I have an amazing surgeon, who is VERY talented and really cares about the patients.. unlike the last guy I went to see about this problem. I knew I needed a new mesh put in, I could tell the hernia (both sides of my groan) repairs both needed to be fixed.  The last surgeon, said I was too much of a "risk" and thought I should just "take it easy, stop dancing, etc" .... HA HA HA. no way. That's ridiculous. I blogged about him and his "amazing" bed side manner in T his Blog! I'm sooo thankful to have this new surgeon! I...

I'm not a number, I'm a person! Don't get me wrong, numbers are VERY important to me. The numbers ofmeals I eat, the number of Calories I take in, The number of lbs. I weigh and most importantly that single number that points out my % of lung function. So I live by numbers, but it doesn't mean I like to be treated like a statistic! I had a certain Surgeon for many years when I was younger. Let's call him Dr. Powelson (close to his real name...but not quite it). Well, Dr. Powelson, oh he was good at what he did, but had no bedside manner at all. I remember when I had to get my stomach tube (like long connector tube) taken out and my first bard button put in. He literally just yanked it out and jabbed the other one in. No warning, nothing. He was never very nice about anything and I remember him complaining a lot about how he didn't like to "work on us CFers." Well, about 1 year and a half ago I went to see him because I had a hernia (which I hav...

I tend to joke I'm an Xmen (since I have mutated DNA) and that my weird medical devices are my inspector gadget parts. Go-go-gadget automatic IV Line. Convenient? I'd say so.The next day I have off from work that I don't have school I am going to make my appointments for that day. I just hope it is within the next few weeks. You may remember me blogging a couple weeks ago about some problems I have been having with my mediport (automatic IV line that is in my chest) and my g-tube (my stomach feeding tube). Well I need to have a surgeon look at the G-tube to see what size I need to put in. Dr.B thinks the one I have may not be the right size.  Which, I'm not looking forward to changing it again, BUT I get the new style tube (the mini) which is smaller and thinner, so it is easier to hide under a bandaid. I'm looking forward to not taping gauze around my G-tube anymore. Its really hard to hide that sometime and it is impossible in swimsuits. Plus, scraping off ta...