Long Time, no speak

Wow have I been through a whirlwind since I last wrote 2 weeks ago. I ended up in the hospital getting surgery to remove one of my kidney stones. It turned into a huge disaster similar to what happened when I had a stone removed 2 years ago. My body couldn't tolerate the stent that was placed in the ureter (between the kidney and the bladder) to make sure that there was no swelling after surgery, and I woke up in the most EXTREME pain I have ever been in. Long story short, my urologist ended up pulling out the stent and the catheter while I was wide awake, and I was screaming and crying for over 4 hours without any relief as they maxed out all different kinds of IV meds and made sure I didn't stop breathing.  I spent the night in the ICU that night because of how much they had to give me. I also wasn't able to see my husband for 5 days- almost no communication at all- because he ended up getting the worst stomach flu he's ever had in his life, probably from taking me to the ER that first night (a nurse told me it had been going around). It was horrible not having my best friend, my partner in life, there with me like he had been the last time I was in the hospital. But I know it wasn't his fault. Luckily my parents were there by my side most of the time and a HUGE support, and I had many family members, friends, and church members praying for me & visiting.

I still have two stones (one in each kidney) that haven't started coming down yet, so if they'll stay up there, I can get them "shockwaved" (broken into little pieces by basically beating my body to bruises) in an outpatient procedure. Unfortunately, I think one of them might be moving because I'm having more pain & irritation on the left side of me and in my bladder now. But I just have to take this hour by hour, day by day.

In this post, I'm not going to go into the details of my hospital stay, or the issue of my urologist leaving for vacation that weekend and therefore leaving me with an incompetent, horrible hospitalist dr. (because there were NO OTHER urologists who work at this hospital!) who decided to tell other dr.'s and nurses that I was a "drug seeker" just because I have tons of health issues and have a higher tolerance for pain meds because of my back problems. Huuuuuuge story about her sometime in the future.... here's one little preview: She decided to discontinue ALL of my medications (for crohn's disease, pain, EVERYTHING I was taking at home); she apparently likes to take patients off of all of their meds and "start over" because SHE knows what's REALLY wrong with the patient... and it took my nurse over 3 hours that night to go through my chart history, find all of the meds that I was on, and get them all approved again by the new hospitalist on call that night. Do you know what happens if you stop your crohn's meds like Prednisone? You can die.

Anyway, back to the pain after surgery and the day after surgery...What happened was I had inflammation and fluid build-up in the kidney from after surgery that was causing more pain and bleeding. There are so many details and there's just not enough time to write it all here. But I needed pain meds to manage this pain and observation to make sure the other stones weren't coming down and that the inflammation wasn't causing any blockage.

 I will say that God did some amazing things, and breakthrough came. Many advocates (nurses and advisors who happened to know my dad- he is a teacher at the adventist school and the hospital is adventist, so he knows tons of people and has taught their kids- and the truth about who I really am) came to my side and defended me, and I ended up getting rid of the crazy dr. (after hearing many stories of the crazy things she's done, I hope she gets fired... we are writing a letter and one of the heads of the hospital who we know has already written her up). She was replaced by great doctor who listened, understood, and gave me what I needed to recover at the hospital. My urologist came back from vacation on Monday, and that's another story in itself also.... because I had told him about my body having horrible pain from the stent last time I had a stone removed, but things were not ready for me post-operatively like they should've been.\\

I will end with this quote:

"I find beauty in not only the beautiful things in life, but the bittersweet and sad as well. To me, there is something poignantly lovely about the human experience from its splendor to its grief. God created all our emotions, not just the happy ones, and for His good purposes. That's why a good cry can feel so good. And hitting our limits forces us to look outside ourselves for a Savior. It is in the plea, when we're at our end, that we can find that which is truly life-giving. Personally, my moments of deepest grief, deepest pain, have resulted in the most beautiful seasons in my heart. I've met God more intimately in those moments than in all the other pleasant ones combined. What isn't completely lovely about that?"

~ Leslie, http://topofthepagewithleslie.blogspot.com/

help

I just spent all of last night in the Emergency room trying to get help for this horrible kidney stone. I barely got any. Then they sent me home 8 hours later. Now, I am  finally at home, and the pain is just getting worse again. This is horrible. I don't have anyone that can help me, not even a hospital. Please pray for me.... I might need to have surgery to get this thing out, but the Dr.'s need to LISTEN TO ME.

Blessings and botox

My hubby got Botox today...But not for the "usual" reasons! (Not that I'm against Botox for cosmetic reasons, but we are NOWHERE NEAR the age to be thinking about wrinkles and sagging, and would never be able to afford this treatment if it wasn't covered by our health insurance.) Botox is now used as a treatment for chronic, severe migraines. So, he got poked a good 20-30 times around the head, neck & shoulders, and we're praying that in the next couple weeks, his headaches will go down in severity and frequency.

Last night was reading around over here and one of the projects this blog is doing is earning money for disabled people in poor countries who cannot even afford a basic wheelchair. One lady wrote about how thankful she was for her disabled daughter to have all of the opportunities for care, therapy, and having any/all medical treatments available here in America. I started thinking how blessed I am, even with all of my and my husband's health challenges at such a young age, to have access to many medical treatments that so many others do not have. Sometimes it takes months, years, to find a treatment or a medicine that works without having too many negative side effects, but we are blessed to be able to try them! I cringe when I look at the possible side effects of certain medicines I'm on, but I also know that without them I would not be sitting here on my couch.

When I think about how there are so many disabled people who do not even have access to a simple wheelchair and end up begging on the streets for money and food, unable to go anywhere unless someone carries them, my heart aches. I am so blessed to live in America. I admit that when I think of living in the U.S. and healthcare, I do not usually come up with the word "blessed". But you know what? It's true! I am blessed to have the health care that I have, even if I regularly pull my hair out over the expenses of it and the way that the insurance companies operate. I am blessed that my health insurance covers thousands of dollars worth of medicine & treatments that weren't even around 10 years ago! It is just a crazy thought.

So, to wrap it up, these were just my random thoughts for today. If you would like to learn about the Free Wheelchair Mission, visit this link. The blog itself (Life Rearranged) was really encouraging to find, because it focuses on having a place where people can come and share their stories of caring for someone with, or having Special Needs. Although I don't really fit into this category, it was inspiring to read a lot of these women's stories about everything they've gone through and how they still have hope through the darkest times in their lives.

If any of you have chronic health conditions, or children with special needs, I really recommend this blog. I do believe that God is good and faithful even through the hardest times in our lives. I believe He hears our prayers and answers them with His perfect timing, and I believe that the hardest things we go through can be the times that we can grow the most in our faith, our hope, and our perseverance.

I do apologize if I was rambling on and on as I am really tired and need to go to bed! I realize this was a rather un-entertaining post, but sometimes I just need to write about what's going on in my mind. I will try to incorporate more pictures and interesting stuff next time I post! :-)

~Melissa

I Can Eat Again!

I can eat some normal food now, thanks to God, everyone's prayers, and a little evil drug called Prednisone! Woo hoo! So glad for this after 7 days of mostly liquids-only. It gets soooo monotonous.  Yay for Costco rotisserie chicken and white rice for dinner! I'm hoping to continue on the path to getting over this flare-up and being able to eat more foods again, although I am still pretty limited in the foods I can eat even when I'm not flaring. Now, if this stupid new kidney stone will pass so I can get on with my life....

I saw this little survey on this blog, and it looked like fun so now I'm going to fill it out too!

 

 Survey Says.............

 

 

 1. What time did you get up this morning? 
Well this is embarrassing... but I've been having sleeping issues... I got up at 1:24 p.m. Yes. But I couldn't go to sleep until around 7 a.m, so I'm still really tired.


2. How do you like your steak? 
I don't eat steak. In fact, I've never even had a bite of steak. Not joking! I was raised eating vegetarian and certain meats just don't appeal to me, probably since I wasn't raised with them. My closest thing to steak would be eating an In 'N Out Burger, which I had for the first time a few years ago!



3. What was the last film you saw at the cinema: 

Ummm Harry Potter and the Deathly Hallows Part 2.(My hubs
reminded me just now, lol)


4. What is your favourite TV show? 

It seems like all my favorites are either on break or have been cancelled, or the main actor has left (Steve Carell, nooooo!) but it was The Office, 24, The Middle, Modern Family, and White Collar for now. I can't pick just one! 


5. If you could live anywhere in the world where would it be? 
Probably here, because I wouldn't want to be away from my family & friends. But, if we all moved to San Diego or Hawaii, I don't think I'd be upset! :-)

6. What did you have for breakfast?

Cream of Wheat. First solid(ish) breakfast in 7 days! No more Ensure for me!


7. What is your favorite food?
I love most italian stuff like eggplant parmesan, fettuccini alfredo, pizza, and peach cobbler a la mode, and so many things... I can't choose one. This seems to be a recurring theme in my survey. I can't ever choose just one thing!

8. Foods you dislike?
Raw onions, bell peppers, all seafood

9. Favorite place to eat?
Broadway Heights, Old Spaghetti Factory, Olive Garden, P.F. Chang's, Crush

10. Favorite dressing?

Well, since I can't eat salad anymore, it doesn't really matter... but I used to LOVE the italian dressing from Olive Garden! 


11. What kind of vehicle do you drive?
'02 Toyota Camry. So smooth & comfy to ride in (usually my hubby drives when we go somewhere, I don't get out as often with my health these days)

12. What are your favorite clothes?

Honestly, my sweat pants and a tank top. If I am at home, you won't see me in anything else! I hafta be comfortable.


13. Where would you visit if you had the chance?
An amazing tropical island like St. Thomas, also Hawaii, and Italy

14. Cup 1/2 empty or 1/2 full?
I think it's funny when people say "overflowing!!!" so I'll say, "overflowing!!!"

15. Where would you want to retire?
Wherever my family & friends are, but I wouldn't mind having some amazing scenery around too!

16. Favorite time of day?
Anytime besides waking up in the morning. ;-)

17. Where were you born?
Angwin, CA (Napa Valley area)

18. What is your favorite sport to watch?
None! Well, only the superbowl because I try to find out about the players and that makes it more interesting. Oh, and maybe some gymnastics once in awhile.

19. What is your favorite fragrance?
It's kinda weird, but I love the smell of the plasticy blow-up rafts and toys in the summer, and the smell of my cats, and freshly washed sheets! lol

20. What is your favorite face cream?
I just realized that I answered this earlier as my favorite "ice cream" and then question #35 was that, so I went back here and had to change it! haha, I just use Cetaphil face wash and face lotion, works for me.

21. Favorite baby/kids products?
Don't know, I don't have kids yet.

22. People watcher?
Yep!

23. Are you a morning or night person?
Afternoon & Night.

24. Do you have any pets?
Yep, my two kids (kitties) Leila and Louie.

25. Any new and exciting news you'd like to share?
I'm able to eat a lot more regular foods now, after 7 days of  mostly liquids!

26. What did you want to be when you were little?
An astronaut, piano player, or a nurse.

27. What is your favorite memory?
Our wedding day and honeymoon week. best.time.ever!

28. Are you a cat or dog person?
Both. But cats are easier and dogs need daily walks and a yard, so we only have cats right now.

29. Are you married?
Yes!

30. Always wear your seat belt?
Yes.

31. Been in a car accident?
Ugh I don't like to talk about that kinda stuff... I feel like I'll jinx myself or something... but I just trust in God to keep us safe every day and keep crazy distracted people off the roads!

32. Any pet peeves?
When people chew REALLY loud at the movie theater (or anywhere really...), drivers who cut you off just to get one car ahead

33. Favorite pizza toppings?
Cheese.

34. Favorite flower?
They're all so pretty, and the good smelling ones are the best. Roses and star lillies come to mind right now.

35. Favorite ice cream?
Right now, vanilla soft serve, and that last bite w/ the plain cone and the ice cream, SO GOOD!

36. Favorite fast food restaurant?
Ehhhh Subway I guess, or Chipotle... can't eat a lot of fast food stuff... grease hurts me, and I can't have lettuce, tomato, etc so I have to be creative.

37. How many times did you fail your driver's test?
No times

38. From whom did you get your last email?
I actually just got a reply e-mail from a blog friend, Hannah, how nice!

39. Which store would you choose to max out your credit card?
Geez I haven't been out enough lately... how about Target!

40. Do anything spontaneous lately?
Went outside and walked around for the first time in a week... it sucks to be sick!

41. Like your job?
Fighting this wretched disease is my job at this point. And I'm not very fond of it!

42. Broccoli?
Can't have it now. Sad. I used to looooooove steamed broccoli w/ mayonnaise... I know, sounds weird... but it's goooooood! I miss it! :-/

43. What was your favorite vacation?
Honeymoon in Santa Cruz & San Diego!

44. Last person you went out to dinner with?

Wow, it's been a long time since I haven't been able to eat real food... ummm... my hubster!

45. What are you listening to right now?
My hubs just turned to this old BeeGee's concert on tv, reminds me of when Jimmy Fallen and Justin Timberlake do that funny skit, have you seen it?

46. What is your favorite color?
I love teal blue and deep purple right now.

47. How many tattoos do you have?
Zero.

48. Coffee drinker?

Only white mochas and/or caramel frappuccinos sometimes; stuff like that. Never black coffee.

Hope you all have a relaxing Sunday and a great week!

I can't think of a title!!!

Well, I didn't end up having to go the hospital! I endured some of the most painful times of my life, and I've had a lot of them, bought I fought, and people prayed, and I went onto a liquid diet to help control the crohn's flare up. Right now I haven't really eaten since Saturday, except a couple of bites of Top Ramen and some Saltines, and even they don't do that well with my gut. I started the most evil medicine in the world (but the ONLY one that will help me), Prednisone, and I think it's finally starting to help. But the side effects, just to list a few, make it harder to sleep, cause anxiety & depression, can make me jittery, moody, cause weight gain, increase appetite, and cause a thing called "moonface" where your face swells up and makes it look like, well, a moon I guess... and these are only short-term side effects. But I am praying that I will get better on this low dose of Prednisone and then be able to taper off of it fairly quickly and not get all of those nasty side effects, including long-term ones like adrenal gland suppression, liver failure, etc... honestly, I am on a lot of meds that have terrible side-effects and I just have to trust God and know that it's better to be on these drugs than to be dying in a hospital room. God is in control of my life, and worrying will not add any days or minutes to mine.

I think I will end my post with a random list of things I'm feeling/doing/experiencing/wanting:

- I'm hungry, but the hunger gets less each day, because I think my stomach is getting used to liquids only and consuming less calories (I'm guessing maybe 1200-1400 a day).

- I was sooo happy to be able to eat some Ramen tonight, but a little scared that it'll cause more pain the further down it goes in my intestines.

- I have lost 10 pounds since Saturday, and that is about the only positive thing that has come from this flare-up.

- I don't even know if most people hear the term "flare-up" very often; it just means my crohn's disease (inflammatory bowel disease) is in its active stages and needs to be controlled.

- I missed my hubby a lot today when he went to work and came home late. Although I want him to be healthy and go to work, I have to admit I love having him home when I'm sick.

- Speaking of sick, I am getting sick of Ensure drinks, which are my only source of nutrition right now besides V8 Splash juice and the occasional saltine/spoon of Ramen.

- I really hope to be able to eat something new tomorrow, anything besides the things mentioned above.

- If anyone has any questions about what Crohn's Disease is, or how it affects me, I'd be happy to answer!

- I am SO thankful for my family, friends, church, etc. who are all continually praying for me.

- Playing with my kitties and focusing on anything besides myself helps me keep my sanity during the day.

I think I'll end here and go relax, read some blogs, watch tv, check my facebook, etc. Right now I have a feeling that things might be turning around for the good, and I hope that feeling stays. I know that God has never left my side, and even through the toughest times, He is watching over me and I am so blessed to have an amazing husband who stands by me through all of it with the most loving, compassionate heart. I didn't have crohn's before we were married, so I think God put us together to help us through these tough times in our lives (although sometimes I think he's a better caretaker than I am with him!)

Have a good rest of the week!

~Melissa

P.S. - I love this song and just remembered how encouraging the lyrics are, so I posted it here, but realized I can't listed to it right now or I will cry! Too many emotions over here!

Prayer Needed

Hey everyone, I just wanted to ask if you could pray for my husband and me. Alex wasn't even able to work his two days this week because of migraines, and even when he didn't have a migraine, he would have a full day of nausea/vomiting. As for me, I am having a huge crohn's disease flare up, and I'm having too much pain and bleeding to be able to manage at home. So I'll most likely be going to the hospital today. Please pray for peace & comfort (I hate the hospital and get lots of anxiety there from past experiences) and pray that my dr.'s will have the right treatments and also have understanding of my unique array of health issues.

My pain has gone down a tiny bit but it usually waxes & wanes, and when it gets bad, it's the worst pain I've ever felt all over my intestines. Like burning fire. And none of my pain meds help. I'm trying to be hopeful and I do trust in God, but I need lots of prayer and support right now.


Thank you all!

~Melissa

P.S. - unfortunately the hospital that I'll most likely be going to does not have internet access available to the patients (sooooo lame) but hopefully I'll be back on here soon.

It's Thursday, and I'm Alive...

At least, I think I am. It's 5:38 a.m. and I already got ready for bed, got IN bed, tried to sleep, read the bible a little, prayed, and here I am wide awake. I had to take some more sleeping medicine so hopefully it'll help soon... please? I need to get to sleep earlier than this! It's really been frustrating lately. Oh, and the 2nd part of the Daycation? Haven't had time for that in between all of this can't-sleep-until-7am business, the hubby-and-I-have-a-million-Dr.'s appointments combined, and not to mention I'm having some rectal bleeding issues again. And If I just grossed you out there, hey, it's a part of my daily life right now and it's really not pleasant, but this is my blog and I'll share about my butt if I want to! :-P haha. Man, it hurts though. If any of you moms out there have had hemorrhoids after giving birth, or just anyone has had them before, put your hands in the air, and wave 'em like you just don't care! Better yet, get a sitz bath and soak those suckers. Cuz that might actually help. Anyway,  this is kinda like hemorrhoids but about 80 times worse at the moment.

(This is from one of the amazing stores we went into on our "Daycation" in Old Town Sacramento.)



 Enough about my bum. I refuse to give it anymore attention tonight. I just need prayer that I can sleep better, at better times, and have more energy. A LOT more energy. Cuz right now I have about a 0.5 on a scale of 1-10! And I need to at least get up and do my chores! I need to exercise to maintain/lose the weight I've gained from my medicines and the side effects from them. Side note-We have been going on beautiful walks around the bike path right by our house that follows the creek, so next time we walk, I will bring my camera and maybe post some pictures!

Prayer for my hubby would be great too. He'll be getting Botox (yes, Botox!) injections for his Migraines next week and we're praying that it will give him significant relief, as he is barely able to work even 2 days a week right now. He also has a lot of different tests (blood test, sleep test, MRI, etc.) coming up, so pray that those would all go well and give accurate results. It's tough around here, but God is with us, and we do have eachother, and the laughter we can still have together carries us through day by day (and, of course, our family and friends...and our kitties. :-)