Medicines, Money, Questions, & Stress

So today is infusion day, Yippee skippie!!

I also received a phone call from my pharmacy & my Pentasa needs to be refilled.  I refilled it, but I'm nervous to pick it up & be told once again that it will cost me over $200.  I qualified for charity care through my hospital & have been receiving 100% coverage for all DR visits, infusions, & specialty tests since last June. This worked out perfectly because my surgery, all CTs, MRIs, & 4-7 hospital stays were taken care of. However, it does not cover pharmacy costs & I'm left to pay Pentasa out of pocket after insurance.  It's a lot of $$ & my income just got cut. So my life is on a severe budget. Why does being sick have to be so costly?  I have to reapply for charity care before my next infusion or else I won't be able to afford Remicade either. Prior to being covered it was costing me after insurance $350-500 every 6 weeks. That's $ I don't have! Needless to say I'm sweating some things. I'm lucky that currently minus this momentary stress related flare-up my Crohn's seems to be under control.  The reason it's in check is from my medicines & now I may not be able to afford the medicines, so if I can't afford the meds I go back to crazy flare-ups. This is a vicious cycle & when I think I'm ahead I fall behind. Well can you see why I'm having a stress flare-up?!? Plus things got worse with the family member & now we aren't speaking at all, which may be beneficial for a cool off period.  We're both so emotionally invested.
Fellow Crohn's Casualties this next part is for you. I don't go see my gastro for a little bit & calling him doesn't really help.   I'm curious about a few things & I'm looking for your answers to my questions.
1) During a flare-up when you have diarrhea & you've emptied the bowels, but still feel the need to go, has anyone ever had a mucus substance come out w/ some blood? Does anyone know what this is? My Dr. says he's only concerned if its a large amount of blood because blood in my stool is a constant.
2) Has anyone found anything to settle or lessen the abdominal cramping pain?
3) Has anyone had any luck with writing to a pharmaceutical company to supply meds? Specifically Shire which is the parent company to Pentasa? I was on Shire's website & they don't even have contact info that's close to me. Closest one is Massachusetts & their headquarters are in Ireland & all that's listed are mailing addresses.
4) I was told by my Dr. to not work out seriously, like lift weights or run long distances, which is ok by me because I hate to run.  Does anyone have any exercise tips that are not strenuous to keep my body in shape besides walking?

I believe that's all the questions and stress related talk for now. I hope everyone has a blessed day & thanks for reading, I was able to cut 45 minutes out of my infusion time.
 Take care!

Stress from family and Crohn's

I hope everyone enjoyed their Memorial Day Weekend, and took a moment to remember why we all had a long weekend.  My boyfriend and I went camping, we just bought a 5th wheel this year, and this was our first outing of the year.  This was suppose to be a weekend of nothingness.  Just to relax and unwind.
Well, that isn't what happened.  & I ask you to read at your own risk.  There's potty talk involved.
My weekend was ruined because of family drama.  It got so bad at one point that I was nauseous and I'm emotional, but this was an all new emotional point.  I've never had such a profound flare-up due to stress.  I understand that stress exacerbates Crohn's but this weekend I learned to what extent.  Sunday afternoon is when everything went down with one of my family members, and I tried to calm myself down.  So I stepped away from our company, and went inside our camper for about 20 minutes.  When I had finally composed myself I returned outside, but I had the worse abdominal cramping, and I had spiked a fever in those 20 minutes. 
I knew that the stress that had just been added to me would make itself known eventually.  Typically when I would stress prior to this situation I'd get abdominal cramping and diarrhea but it would subside after an hour or two.
That was not the case.  I spent the rest of the evening with abdominal pain and a fever.  The emotions had also drained me.  I went to bed on our last night of camping at 7:45pm.  I slept until 11pm and then I tossed and turned all night battling a slight fever, abdominal pain, and disgusting gas.  At 6am I just barely made it to the bathroom. It was nice that we had a private bathroom in our camper, but the whole camper smelt by the time I was done.  I would compare my bathroom use to that of when I had my colonoscopy.  I couldn't leave the bathroom for an hour...it was absolutely disgusting, and I wish I could leave because of the smell.  Once I had emptied out my bowels I still had some minor cramping, but the fever subsided.  I had expected their to some Crohn's repercussion, but I really had never had it be that extreme before.  We packed up camp after I was done using the bathroom, and tried to leave as quick as we could.  I didn't want to be there anymore, and the fun of our weekend had deflated like a balloon.
I know life has its ups and downs, but what went down with one of my family members is a huge down.  I trusted them whole heartily, and I was thrown by the way side for all the wrong reasons.  My mini-vacation was ruined, and not only my time but that of my boyfriend and others we went camping with. 
Now that my flare-up has subsided except for the obnoxious gas, I will move on. I am resilient, and like a Phoenix I will rise from these ashes.  Take care readers, and here's to better days!

Happy, Happy, Happy

     It seems that in the last few weeks I've heard quite a few of my clients tell me how unhappy they are in life.  Some seem to be content with the fact that they manage day to day, but wish that they had ultimately chosen a different path in life.  The issues with life seem to vary from career choice, family, spouses, money, location, etc.  Now I understand that one probably can't be happy all the time, and that life has a way of beating us up sometimes.  However typically a person can make a change in their life to have their happiness.  I wish these people would because as they live their life in some sort of a lie they are not only hurting themselves, but they are hurting others that are involved with them, be it family, friends, coworkers, whomever.
     Why does it matter to me?  Well it's been almost a full year since my surgery fiasco and stroke, and having Crohn's means that I've altered how I view my life on this Earth.  I'm 24 years old and I have a great grasp on the fact that our time here on this Earth in this form of a human is limited.  Why would anyone want to live it being anything but happy?  Happiness, as I view it, can not come from possessions, money, or things, but comes from the company one keeps and the memories you make.  To quote a television show (The Real Housewives on BRAVO) " Money just gives you Money."
     To me, happiness is success.  I use to think that I wanted to be a successful business woman, and make 6 figures while working 80 hours a week, and have a family some day.  That's way too many hats to wear, and with my Crohn's I haven't even been able to work a 40 hour week let alone 80.  So my happiness is simple.  It's to do something I love, and currently that's cleaning houses.  I'm good at what I do and I have my OCD to thank for that, but I also enjoy knowing that some people rely on us because for one reason or another they are incapable of cleaning their house.  Customer Service has always been my line of work, and will continue to be forever even if I stop cleaning I will most likely pick another career that deals with human interaction....I enjoy and find satisfaction in knowing that what I do no matter how small can impact a person in a positive light.
     My love life...at 24 years old I can say I have found my soul-mate, the one, my other half, & any other extremely cliche name for my life partner.  His name is Seth, and I have known him since the 5th grade.  We grew up 1 mile from one another, and in 5th grade we "dated" for the school year.  Of course dating in 5th grade consisted of holding hands on the bus, and sometimes sitting together at lunch.  Needless to say our young love didn't last, and with the school year ending he broke up with me (I'll tell that story in a different blog post), but we were friends throughout our time in school.  I am a year older than him so I graduated and went off to college, but came to his graduation party from High School and with social media we kept in contact.  Almost every 6-8 months we 'd ask each other for life updates.  Well, we reconnected in January of 2012 & we've been together ever since.  I love him with all my heart, and finally understand when people who were truly in love use to tell me that when you find that person you just know.  I know that I am truly blessed, and on the day when we finally do wed it will be till death do us part relationship.  This may come from the fact that we both have parents who divorced, but I know that I will marry my best friend.  I use to tell my mom that no matter how long I had to wait to get married that I would because I refused to go through "the BIG D & I don't mean Dallas."  I'd become a crazy cat lady before I married just to marry, so when our day comes, and I walk down that aisle I will know that he and I are my favorite love story.
     Money is always a problem, and will probably always be a problem.  There never seems to be enough.  Seth and I spent our last couple of weeks dreaming of winning the powerball, and what we would do with our winnings.  It was great to dream of having 300 million lying around, but sadly we don't live anywhere near Florida so we did not win the jackpot or anything at all.  We still enjoy playing numbers and will continue too, but we understand we have to work for what we have.  We are currently saving for a house, and with me being self-employed my income can not count so we are limited in our mortgage approval.  So we are looking at houses, and hoping we find that one that can be our starter home, and trying to save money for a deposit while trying to down some bills to help boost our approval amount.  Student loans suck, end of discussion!  But we are working at it, and know that this will take time, and that patience truly is a virtue in this instance.  So money limits us all the time, but money won't make me happy....it just makes it easier, and maybe someday I will have an exurbanite amount of money, but I don't need it to be happy.
     Basically what I'm trying to say is find happiness in what you have, and the situations you are handed.  This life is a gift and I hope you treat it that way.  I know that I will probably die from Crohn's complications, and I hope that it's 90 years from now, but the likelihood of that is small.  So I wake up everyday and am thankful I woke up and try to appreciate all the little things life gives or has given me.  And when life does get you down remember that with each sunset their is a new sunrise.  Enjoy this life because you only live once, and when you are on your death bed you don't want your one regret to be that you wish you had been happier.  Find your happy, and do whatever it takes to keep your happy.  Like Phil Robertson always says "HAPPY, HAPPY, HAPPY."
Have a great Sunday Y'all!

When an old problem becomes a new problem

     I have found that having Crohn's has resulted in other body ailments re-upping themselves.  So not only am I struggling to keep my Crohn's in check, but I'm adding doctor appointments to try & figure out what else is going wrong with my health.
     About 1.5 years ago I noticed my skin flaking like crazy.  I would wear long sleeves because my arms would be so red and flaky that I was embarrassed.  I had remembered my doctor talking about how my skin could develop a rash due to Crohn's so I ASSUMED (which no one should ever do, and I should know better than to) that it was just a rash that was Crohn's related.  I also was living far from my doctors at the time, and it would of been a pain to travel 3.5 hours to my doctors for them just to tell me that it was Crohn's related... I ignored the problem and thought it would go away, and it did clear itself up.  Until this winter, my dry spots returned & they were painful to put lotion on.  So I finally spoke with my Gastro. Dr. about my dry spots, and he gave me a referral for a dermatologist.  I saw the dermatologist, which was a nightmare. 

     Side Story...I do not enjoy going to the doctors, and dislike that I've been to a doctor more times in the last year than in my 23 years of life before that.  So the dermatologist walked in looked at my one dry spot and said it's eczema, here's a prescription if it doesn't work call back & we will see you again. Signed my paperwork, and out the door she went.  I have never felt more like a number than in that instance, I was just an insurance paycheck to her.  I walked out of there irate, and have not been back since.  There was no Hi how are you?, what's going on? nothing! It was so rude.

     So I was diagnosed with eczema, and as a kid I had had some issues with eczema but it was little red itchy bumps just on my arms.  My eczema had changed, and I'm assuming it's because of my Crohn's messing with my body's chi.
     My other old problem was low iron count in my blood.  A typical hematocrit level (one measure for calculating iron, the other is hemoglobin levels)  so a typical hematocrit level in an adult female is 34.9 to 44.5  Proper Iron levels.  My hematocrit level before I was diagnosed with Crohn's or had really extreme symptom of Crohn's was typically 33.  Now my hematocrit levels are 30-31 in my last 2 blood draws.  My doctor asked me to start taking iron supplements every other day because of the constipation iron pills cause.  He wants my iron levels to rise, but doesn't want to throw my intestines into a tizzy especially since we've come so far, and finally have my crohn's in check.  He's mentioned 2x now that if we don't raise my iron levels there is a possibility of needing a blood infusion, which I'd like to avoid.  But my blood type is A positive, ARE YOU MY TYPE? :)  A little blood humor there.
     SO I have a new problem, and am looking for any guidance (fellow Crohn's Casualties) before I call my doctor.  When I take the iron supplement I end up with 3 hours of fairly intense intestinal cramping.  I can only fathom that this is a result of me upsetting my infected areas of my intestine.  I have 2 portions of infected intestine left in me, and I'm wondering if the digestion process of the iron pill is causing the pain.  Has anyone had to take or takes iron pills?  Do you know this cramping that I speak of?  Does Metamucil help all?  Should I try liquid iron?  Suggestions, I know none of us are doctors or maybe a few are, but y'all aren't my physician and it'd be best to contact him. But I am looking for ideas or to hear I'm not the only one who has this issue.  So today I didn't take my iron pill, and I've been feeling BLAH all day. When my iron is low I usually have chills, joint pain, and feel sluggish, and I've felt this way all day.  I can't find a happy medium, but the sun is out and it's 65 here so I am sitting inside in flannel pj bottoms and a sweatshirt with the sliding glass door open.  I may be cold but I am trying to enjoy the sun, and now hopefully to enjoy my weekend.
Take care y'all!

Selfish Homemaker

     I've mentioned before a few of the perks to co-owning a business, and today's perk is being finished by 1pm.  Granted I started cleaning at 6am, but I am already home and changed into comfy clothes.  I love being able to put on my relax pants (PJ bottoms) and do whatever I need to get done around the house.  Today when I got home I started some laundry, and I still have to wash some dishes, and then I'm making Chicken Parm. for dinner.  I wear the Suzy Homemaker apron well, and my boyfriend doesn't understand how lucky he is, well maybe he does :).  Anyway...
     I wanted to tell y'all that after I finished my last blog post I had thought I jinxed myself, but it was sort of a false alarm.  The next day after my blog post I had ate breakfast and made myself a homemade latte.  I went off to work and about 2 hours after I ate I cramped up pretty badly, and wasn't very useful cleaning for about 3-4 hours.  I came home and relaxed that night and thought that I was starting a flare-up.  Which threw my mind into overdrive figuring out what it meant for me now cause it meant Pentasa wasn't working with the Remicade.  The next morning when I awoke I had a little clearer thought process, and thought maybe the coffee had thrown my system into an abdominal cramp so I had my bowl of cereal and got ready for work as usual.  We arrived at the 1st house, and 2 hours after eating I cramped up again, and laid on the floor until I was able to move and get back to work, at a much slower pace, but I was still working.  My mom, who works with me, asked me about my eating habits and if anything had changed, and I told her about my new cereal and coffee intake 2 days ago, and how I just had cereal that morning.  So we determined together that I should stop eating the cereal, and I haven't had any issues with abdominal cramping since.  I'm so grateful to my medical team that we have found a solution to keep my flare-ups at bay.  The change in my personality is easily noticeable, and people tell me the color has returned to my face.  I hope this lasts for a long period of time. 
     For my fellow Crohn's Casualties that are still experiencing flare-ups, I'm sorry.  I feel your pain, and 3 weeks ago I was in the same boat.
     I wanted to take a moment to talk about why I started this blog.  I've received a few comments from readers, friends, and families telling me how brave I am for sharing my story.  I thank y'all for thinking I am brave, but I must admit I have selfish reasons for this blog.  I was having issues coping with still being sick after having surgery, and felt like the only person my age who had Crohn's.  I think the last concept came from being in the hospital 4-5 times after surgery I was always with elderly people.  I had thought about starting a blog for quite some time, but didn't think anyone would read it.  I finally got over my fear of no one reading the blog, and knew that this vent session would be therapeutic to me. I find myself much less emotional about my life, and people who I don't know read my blog as well as friends and family.  I think this is a great way for me to share intimate details about my crohn's life while remaining behind a computer screen so judgment doesn't matter.  Although since being in the hospital I think I have no shame left...the lack of privacy while staying there has opened me up to be honest about things that go on with me, and I believe that's the only way my advice can be useful to those who have crohn's or are interested in learning about crohn's.

I wish y'all a marvelous week!

Long time, no posts & Final to my surgery

     Sorry about not posting for quite some time, but I have been rather busy.  So I want to start with saying that I am doing and feeling great!  This is a drastic change from 10 days before my last post.  Before surgery for approx. 2 months I had been feeling awful, and then my surgery nightmare, and post recovery were not too well for me on the health field.  Well that all has changed...Pentasa + Remicade = My great feeling/mood.  My body is finally starting to repair itself, and the major sign of that was my period came back.  I'm sure plenty of women would love for their period to disappear for a month or 2, but I know that I'm really not doing well health wise when it does.  So for now I am grateful for its return.  Before my doctor and I had this figured out this combination I was finding it rather difficult to be up beat about life in general.  I've always tried to maintain a positive attitude, and think I put on a good front for those people who I wouldn't consider extremely close (mom & boyfriend).  Extremely close people get to listen to me gripe, cry, whine, complain about crohn's and how I feel that day.  I've missed about 50 days of work in the past 7 months because of my illness...fortunately I co-own a housekeeping business and my partners have been very understanding and picked up my slack.  So quick recap, I'm feeling great and everyone is noticing, which must mean I'm a grump butt when I don't feel well.
    Rowan Atkinson is hilarious.  Whenever I write a new blog I start up Netflix and choose a movie at random from the different categories.  Today I chose Mr. Bean's Holiday, and I'm enjoying it and becoming distracted by it.

     Now I'm going to finish telling everyone about my terrible surgery experience.  I had told you about my drainage bags, and how my intestines didn't heal to one another for a few months after surgery, and my surgeon discussed possibly going back in for a colostomy.
Well I was in my hospital bed and my surgeon came in and said my drainage levels were finally stabling, and if all went well I could go home on Monday, which was 1 day away.  So I was feeling great even with my lack of sleep, and my boyfriend was there.  We were watching Food Network because I'm a glutton for punishment, and it was 9:30am from what I remember.  My mom had just texted me saying she would be in to see me later that day because she hadn't had much rest either.  I never even had a chance to respond because the next thing I remember my heart felt like it was racing, and my breathing became abnormal.  I told my boyfriend that I didn't feel good & thought I may puke; he handed me my bucket that was at my bedside table and I grabbed on to it just waiting.  The next thing I knew my vision started to go in and out, and I told Seth, my boyfriend, that I couldn't see and then my muscle control went.  My head dropped down, the bucket fell from my arms and my vision was gone entirely.  After that I only remember that I was trying to tell Seth to call my mom, but I couldn't say anything.  At this point in my mind I started freaking out, I couldn't see, move, or speak.  Then I sort of blacked out, and the next thing I remember is a nurse asking me how many fingers she was holding up.  I was panicked because I still couldn't see, but my speech had returned.  She proceeded to ask me about my sight, and I told her that it looked like an old television screen all black and white little squares.  She then asked me to squeeze her fingers with each hand, make a fist and push against her hands.  My vision restored itself.  She moved to my legs, and asked me to do the same but with my feet.  I tried with all my might to move my left leg, but couldn't.  My leg was numb from the knee down.  I was stable though, and my heart and breathing had returned to normal.  After 3 hours my left leg returned with full capabilities. My boyfriend told me that 5 nurses had rushed in after he had left the room to grab someone when I slumped over in the chair.  They hoisted me up on the bed, and when they had done so they opened one of my Hickman ports, and I began to bleed out as well.  I was then informed that it was suspected that I had a TIA /Mini-Stroke and Pulmonary Embolism.  I had to stay in the hospital for an additional 6 days after my stroke to make sure that it didn't happen again, and I had to be cleared from neurology, cardiology, and gastroenterology.  This sucked!  My brain scan came back clean, but my heart scan showed I had a tiny hole in my heart.  My cardiologist would not fix the hole unless I have or had another stroke or another heart complication.  So this means that I will be on a low-dose aspirin regiment the rest of my life.  I am so very grateful that I had no residual damage from my stroke, but it makes it hard explaining to new doctors what happened because they expect something to be wrong with me.  I do believe that from my stroke my depth perception is off because I have noticed that I seem to bump my head a lot more than I use to.  It's almost like I lose sight of things and a concept of how far away they are like when I lean over or into things.  I understand that sounds so weird, but has anyone else experienced anything like this?      
     But there you have it, My whole hospital surgery story, and let's hope when I have to have gastro surgery again that it goes better than my first.  The reason I say when is because my surgeon already said I will need to come back in 5 years time for my other infected portions, but I currently feel great.  My current medicine list is as follows;
*Remicade every 6 weeks
* Pentasa 8 pills every day
* Iron supplement 1 every other day
* 81mg Aspirin 1 every day
* Multivitamin 1 every day
* Metamucil as needed
Total count of pills in a day = 12

    Well I hope to get into some structured schedule for writing this blog, but with this nice weather I don't know how likely that is to happen.  Please stay tuned for more on my life of being a crohn's casualty.