Category Archives: Uncategorized

God’s Not Finished With Me Yet!!!

Hello everyone!  Hope everything is going well your way!  Mine has been very interesting to say the least.  Not something that I would like to relive…ever!

It began in March when I began to feel not – so- great.  I was in the middle of a flare from my Crohn’s Disease.  I was kinda getting nervous because I knew in another month our family was scheduled to go on vacation in Las Vegas and I didn’t want to be in the middle of a flare.  I went ahead and took the maximum amount of steroids that I could take and that took care of my energy, however, I still felt a pain in my right side.  I can live with that, right?? 

During this time, my mother – in – law had been in the hospital for multiple issues.  On one particular day I was feeling better with my flare and decided to visit her in the rehabilitation unit she was in.  While I was there, she received some bad news of a set back and she needed to be transported to big Barnes to get some testing done.  All of the sudden, I felt an all to familiar pain in my back but I kept it to myself because I was trying to be strong for my mother- in-law.  When I got home, I laid down for a while and the pain subsided a little but was still there.  In the morning, I called my doctor and described my pain to her over the phone.  She told me since I have a history of these, my best bet would be to go straight to the ER.  I did and I was right – I had developed another blood clot in my right lung again!  This would make the 3rd PE blood clot in a year!  God definitely has something bigger and better in store for me! I was in the hospital for 3 days.  Need I remind you that my mother – in – law was still in the hospital also, therefore, my husband had his wife and mother in two different hospitals at the same time!  He could get no rest, bless his heart!  I was put on Coumadin again.  Now, Vegas was really getting too close for comfort to have any hiccups!

Vegas was fun, however the first day I was there, either I twisted my right knee or my arthritis was really acting up.  I mean I was in a lot of pain with this knee and could barely walk the rest of the time there!  To subside the pain, I took a lot of Advil that I had brought with me and that still really didn’t work.  I tried not to let that stop me from having a great time but it was always there with me.  The day after we got back from Vegas, I noticed a lot of blood in my bag and was kind of frightened with what I saw.  My home health nurse came that day to check my PT/INR and other blood tests as well as to change my dressing.  She just about freaked when my PT/INR turned out to be 7.3!  The normal range for me is 2 -3.  My blood was extremely thin and she told me to not get cut or fall or else I could bleed to death!  When she changed my dressing, she noticed that my stitches had somehow popped again and my catheter was just hanging there!  I just got this thing replaced back in February and now it has popped again!  That turned out to be the least of my worries..

That night I continued to lose a lot of blood through my ostomy bag.  I felt light-headed and dizzy and my heart raced when I stood up.  I continued to feel this way throughout the night and into the morning.  That next morning, my home health nurse called and told me that my hemoglobin (blood) count was an 8.1 and that I should go to the ER (normal range is 12-15).  She told me that the doctors usually order a blood transfusion at 8.0.  My GI doctor also got these results and she told me to go to an ER pronto!  I went to the nearest one to my house.  I really shouldn’t have driven in the state I was in but I was okay sitting down and driving, it was when I had to walk from the parking lot into the hospital where I had problems.  They got me settled in an ER bed and gave me a unit of blood because now my blood count had dropped to a 6.8!  About 45 mins later, I lost a lot of blood through my bag by emptying it 3 times in a row!  The second time, I nearly passed out, thank Heavens I had a friend sitting with me that could notify someone!  During this time, my ostomy bag decided it had enough and it blew!  I literally was sitting in a pool of blood!  It looked like I was a victim in a crime scene!  I broke down while I was trying to clean myself up because I was’t feeling well and this was a lot to deal with at this time.  An all-time low for me..I just wanted to go home and jump in the bath.  The ER doctors decided that they couldn’t do much more for me so I was to be transported by ambulance to SLU Hospital in St. Louis.  I waited forever until a bed was ready at the hospital then had to waited a long time for an ambulance to take me..

When I got to the hospital, it was 12:30am.  They drew some more blood and this time my blood count was at an all-time low of 5.3!  I was losing blood pretty rapidly.  Early the next morning, I received 2 units of blood.  They diagnosed me with an active GI bleed.  That day they scheduled me for an endoscopy and colonoscopy so they could try and find out where the bleeding was coming from.  They couldn’t find anywhere that I was losing all this blood.  Ultimately they decided to chalk it up to the combination of the Coumadin I was on along with the massive amounts of Advil I took for my aching knee in Vegas.  That day I learned not to mix Coumadin and Advil!  They kept me there to monitor my blood count and to make sure it wasn’t going to go down anymore.  My blood count kept around 7.0-7.5.  When I was released last night, my count was 7.4.  I still have a way to get to the normal count of 12-15 but I am trying to eat foods that are rich in iron so that I can get my strength back.  Right now I am pretty weak, just taking a little bit at a time, but I’ll make it!  Before they released me, they sutured up my catheter so I wouldn’t have to go to another hospital to get it done.  Again, my mother – in – law is still in the hospital/rehab and my husband again had his wife and mother at different hospitals at the same time!  These past 2 months has been boogers for our family to say the least!!

Please pray for our family, we need all we can get at this time..I am so blessed to have such a great support system!

Chow for now!

Kelly

Fighting Depression

 

Hello everyone, I hope you are doing well.  Me, I’m doing okay, however, I am fighting a little depression these days.  I will try and tell ya’ll what is going on, if I can make some sense of it myself.

Where do I start?  I don’t know how or why this depression has slipped up on me because I try and try my hardest to live one day at a time and not look back.  I know you can’t live your life looking back, you must always move forward with your life.  Although I know all of this, reminding myself is another task…

Well, my youngest daughter turned 16 a few weeks ago and it just seems as if we have been head to head about things since her birthday!  It’s just one thing after another with her these days.  I guess she is trying to see what her boundaries are.  I’m strong but every once in a while I need a break!  It’s just the drama we have to go through to get to an endpoint is unbelievable, but of course I still love her!

At the same time, I am thinking of the future and future bills we will come across.  The big one is Bella’s college and then she will need a car for college.  It seems like a lot of money when just one person is working and the other on disability.  I am feeling the itch to get at least a part-time job, however, I know me and will eventually end up in the hospital for some reason and with that comes multiple doctor appointments.

I know I should give my worries to God, and I do on a daily basis and I also know that I should live one day at a time, but I can’t help to think that I should help with the bills that will be coming in.  As you can tell, I still struggle with this no working thing after 5 years.  I have never had to rely on someone else to help me out with the bills, house cleaning and taking care of myself at times but this is what this disease has done to me.  I feel as if I am a totally different person than I was before.  I used to be self sufficient and hard working and was proud of myself for accomplishing that.  There are some days now when I try my best to muster up the strength to get out of the bed and onto the couch.

Sometimes I ask myself and God what I did that was so wrong that I am being punished for now.  I probably don’t want to know the answer to that!  I admit, I wasn’t exactly an angel in the past but that was in the past, way past.  Maybe I should believe that God is preparing me for something excellent that he has for me in the future.  I need to be ready for what he has in store for me!

If I think about it in that way, I do feel better about all the things going on in my life.  I also feel better now that I have talked out what all is in my head and have many ears listening to me.  Thank you for being here for me.  You can imagine what all this has done to my Crohn’s Disease, can’t you??  I am trying to get my diarrhea under control as we speak.  Please send up a little prayer for me today.  I truly do feel better now, thanks again!  This is just another symptom of having Crohn’s Disease – depression.

Chow for now!

Kelly

 

My Support Team

Hello everyone, hope everything is going well your way! Today, I would like to give a shout out to my support team to let them know how much I appreciate them. Without them, I honestly don’t know what I would do or how I would cope with this disease.

I would like to start off thanking my daughter, Isabella. This 15 year old girl is my rock.  She gets me through the emotional aspect of my disease as well as being my helper around the house. When I get down and depressed because I can’t do the things I used to do or be able to do, she is the the one that will just sit and talk to me and try her best to cheer me up and get me looking toward the positive side again.  I cannot tell you how many times during a flare up that I had to postpone or cancel plans I had with her and I can tell in her face that she is disappointed, but she wouldn’t let me know and she understands.  I hate it that she has to deal with all this, she should be a carefree teenage girl with no worries.  I try my best not to burden her with a lot of the small stuff and muster up the energy somehow to get through the day acting as if I am feeling well even when I am in a lot of pain.  She also is the one that will go with me to my Crohn’s Support Group meetings once a month.  When I began going, I didn’t even have to ask her if she wanted to go, she just told me she was going with me.  My support group is in St. Louis so the ride gives us a chance to catch up with what is going on in school and just whatever comes to mind.  I am truly thankful for all the things she does for me.  I love her bunches!

Another person I would like to thank is my husband, Mark.  He takes me to the ER at all hours of the night as well as brings me all the necessities I left behind at home.  He works long, druling hours at work, however, he finds time to take off during the day to come and see me in the hospital even if he can’t stay too long.  He also talks to the nurses and doctors for me when I am all drugged up and not thinking clearly!  He has learned a lot about me and my hospital stays and knows what to expect from me as well as the staff taking care of me.  He also is the one holding down the fort while I’m gone.  He makes sure the house is clean so that I don’t have to come home and worry about cleaning the house. He also takes care of the dog which is a full-time job right there!  Again, I am thankful for all the things he does for me.  I love him bunches also!

There are other people that I would like to thank also.  My mother-in-law, Dolores.  Without her, I would have definitely gone crazy by now!  She will come sit and keep me company when I’m in the hospital as well as when I’m at home sick.  She has cleaned my house when I’m in the hospital, has taken me places when I couldn’t drive and bakes the most delicious chocolate chip cookies when I’m not feeling well!  She is a Godsend!  I also want to thank my friend Mrs. Melissa Wagner.  She is the person who takes my daughter to and from school when I am in the hospital.  It’s usually spare-of-the-moment because I had gone to the the ER in the middle of the night and the hospital kept me or I may have a couple of hours notice before they admit me and I’m scrambling to find a way to get my daughter to and from school.  Thank you for being there for us!

As I speak, I am battling some major hair loss!  It’s not from being zinc deficient like the last time so I believe it may be hormonal.  I was taking hormone pills for my hot flashes and the doctors told me that they may be the cause of my blood clots as well as my catheter so I stopped taking them.  I’d rather have the hot flashes than the blood clots anytime!  So now that I’ve stopped the hormone pills, my hair is falling out!  It’s a vicious cycle I can’t get out of!

Anywhoo, I just wanted to take a minute and say thanks to all who helped me throughout this time of my life.  I couldn’t make it without you.  It truly does take a village, doesn’t it?

Chow for now!

Kelly

My Health With A Silver Lining

Hello everyone, hope things are going well your way.  In this post I would like to tell you about a little something in my life that has finally came together, thanks to me in a way.  Also, I will also tell you what is currently going on with my health.

First, let’s talk about my health – not too bad this time!  Every since I got out of the hospital last month due to the blood clot, my iron has been very low.  The normal iron range for women is 12-15 dl.  My iron level is 7 dl.   No matter how many supplements I take, I can’t get my iron level to rise so my TPN nutrient doctor has ordered me to go to big Barnes one day a week for 5 weeks to get a one hour iron infusion.  It’s not what I wanted for the summer, but this is nothing compared to what I have been through lately!

Also, I have my retainer or appliance in my mouth now.  It is suppose to gradually bring my jaw forward and lock it back into place.  I feel as if I am back in high school now.  Thank Heavens it’s only the bottom one so no one can really tell until I try to talk!  I believe it may be working but it’s really to soon to tell right now.  I know one thing, even though the doctor is telling me that if this retainer doesn’t work, I will need surgery, there is no way I will be having surgery!  This isn’t my main concern right now and I don’t feel like getting another major surgery and my jaw wired shut, although I bet my husband wouldn’t mind!

 

Okay, there was a silver lining that happened while I was in the hospital last month.  This is near and dear to my heart.  My father and brother have not seen eye to eye for many years.  They had not seen nor spoken to each other during that time either.  My brother moved up here last month, in fact he moved during the time I was in the hospital.  My father lives 3 hours south of me in Missouri.  Once I called and told my brother and my father that I was in the hospital and the reason, they both dropped everything and came to see me.  It was then, in my hospital room, that they were forced to be together and realized that they had to come together for me. During dad’s stay up here that week, he called my brother and talked to him and he also helped move some things over from my house to my brother’s new place.  Since then, they have been talking on a regular basis and see each other when they can.  I feel truly thankful and blessed that I have my family back together again.  On a lighter note – I don’t do this for just anyone!  Just kidding, I love them both dearly and I am so happy they are talking again!

So, this is what is going on with my life presently.  It’s not that bad, I just have to get 5 weeks of iron infusions – I’ll take that anytime over the things I have been through in the past!  I am just taking one day at a time and enjoying how I am feeling now.  At the present, I have energy and little pain.  I am still taking my blood thinners to dissolve the blood clot also.  The doctors say it will take 6-9 months to dissolve it completely.  I still have my off days, but currently there is more on days than off!

Chow for now!

Kelly

 

My Hospital Stay With a Blood Clot part II

Hello, it’s me again with part 2 of my post about the blood clot in my lung.  In this post, I will tell you about my experiences in the hospital.  Boy, are they a doozie!

To start out with, they gave me dilaudid, a very powerful narcotic that made me hallucinate (I cannot have morphine because I’m allergic to it).  Every time I looked at someone in the room, I believed they had big, black bugs and birds dive bombing their heads!  I actually told my daughter and her father to watch out, they had bugs and birds flying around their heads!  They looked at me like I was crazy, and I was at the time! How embarrassing.  I did find a way to not embarrass myself again like that – even though I could have sworn I seen these bugs and birds around people’s heads, I just told myself it wasn’t real because if it was they would be jumping and yelling like crazy.  It was hard not to warn them, but I just kept that secret to myself the rest of the time I was on that drug.  I was afraid they were going to send me to the funny farm!

I honestly don’t know which system, the digestive or the respiratory that hurts the worst.  I would get these pains in my back/side that would feel as though something was electrocuting me at that spot with tiny needles.  Then I would also feel as though I was having back spasms in that area.  I also had what they called Pleurisy which is fluid between the layers of the lung itself.  I could not lay on either side of my body, when I did it hurt so bad and I would get anxiety because I would be grasping for air.  I could only lay on my back which was a bummer.

One time there was this CNA who was taking my vitals and I had asked her if she could get someone to help me scoot up in the bed.  She told me that she would help out before she got someone.  She started having me flip on my sides and all the sudden I was in full panic mode!  It hurt so bad when she flipped me on either side of my body and I couldn’t even get in the air to scream!  She ran to get the nurses and they tried to calm me down and breathe and when that didn’t do, the nurses  ran to get a doctor.  I had never felt so much pain and to not be able to breathe was painful too.  Finally, after cranking up my oxygen and giving me some pain meds, I started calming down a bit.  I would not wish that upon anyone.

There was this one night there, I believe the second night I was there that the nurses collected around 5000ml of urine from my catheter.  They told me the next morning that it was equivalent to 10 pounds of fluid!  I lost 10 pounds that one night!  I was for some reason very swollen up the day before.  I also had this weird low grade fever I couldn’t get rid of and they wanted to ship me to the big Barnes in the city.  They told me I was the number 1 person on the waiting list and I begged them to let me stay.  Luckily for me, after all that fluid was released, my vitals started getting better and got off the list!  Oh yeah, the dye from the ct scan in the ER hurt my right kidney and threw me in kidney failure.  Sometimes, I believe if I didn’t have bad luck, I wouldn’t have any luck at all!  So in the midst of all the lung problems, I had to worry about kidney failure.  They were actually talking about putting me on dialysis at one time!

Finally, I was getting a little better after 8 days in the ICU so the nurse taking care of me asked me if I wanted her to do my hair.  She was a hairdresser previously and she knew it would make me feel better if I could do a little something to myself.  I am not the one to turn down any kind of pampering so she washed my hair and after it dried, she french braided it.  I felt like a new person!  The next day I was transferred to a regular room for 4 more days of recovery.  There I was to gather my strength so I could walk and to get off the oxygen.  The first time I walked the hallway, I had a walker and my oxygen tank with me.  I felt like a little old lady!

 

The nurses there were all so nice and pleasant to me, even the doctors, the people who took my vitals and the lunch ladies.  I have never had such great care from all the many hospitals that I have been in.  There was this student nurse that helped take care of me one day.  Her name was Bethany.  She was the nicest person – she would peek her head in every 30 minutes to see if I was okay or needed anything.  When she found out I had an ostomy, she asked if she could watch me drain it and then she had 20 questions afterward.  She told me that she hadn’t come across a person with a bag yet in her internship and she was fascinated with it and giddy.  I wish I could say the same – although I have come to get used to it now.

Finally after 12 days I was released from the hospital.  The weekend before I was released, my daughter Bella spent the night with me.  We had a girl’s night in room 435 that night and I loved every bit of it!  The doctors believe the clot came from the catheter that I had replaced back in February.  They believe a clot may have formed there, then was knocked loose somehow and it traveled to my lung where it grew larger and cut off my blood circulation and part of my lung died.  I don’t think I will get this one replaced ever again..I am now on a blood thinner for at least 9 months, maybe more.

I want to thank everyone who prayed for me.  I really needed all that I could get that night and throughout my hospital stay.  I would love it if you could continue praying for me, I obviously need all I can get. I still have the clot in my lung, it’s just dissolving slowly and will be absorbed in my system.  I’m not dare going to ask what’s next, I don’t want to know!  I’m just going to take one day at a time, as I still get winded walking inclines or up the stairs.  Right now I’m taking the elevator until I can get myself built back up.  Thank you again for all your prayers and thoughts.

Chow for now!

New Developments

Hello everyone!  I hope ya’ll are doing well these days.  In this post, I would like to update you on some issues that have been going on with me.  One of these days, I hope I can give you some out-of-this-world positive news!

The other day, my doctor’s nurse called me and told me my potassium and magnesium was pretty low. They told me from the looks of my blood work it looks as if I am dehydrated.  I have had lots of diarrhea lately and I am losing a lot of fluids. They talked about putting me in the hospital to pump me full of each.  I said whatever I could say in order for them NOT to put me in the hospital (I hate that place)!  Instead, I suggested to them that I could go on the TPN every night instead of the every other night I had been doing.  Just to let you know, I started out taking it every night and was working on tapering off the TPN until this incident happened.  I took one step forward and two steps back!  I also ask them to take all of the calories out of the TPN bag because I was doing 600 calories a night and I don’t need anymore calories, I’m doing fine on my own!  I am already 12 pounds over my ideal weight from this thing.  Sometimes I feel as if they just don’t understand or care if I get huge or not, just keep gaining that weight, it’s good for you!

Okay, I’m not sure how to tell you this but here it goes..a couple of weeks ago I sat down on the toilet to pee.  All the sudden, I felt something fall out of my butt!  Now those of you who follow me know that nothing should be coming out of my butt due to my ostomy.  Anyhoo, I panicked and looked down.  There is something at the bottom of the toilet that looks like a worm!  Now I really panic and run into the living room to get my camera to take a picture of it!  I finally got brave and fished it out – it was a rubber band or seton, the medical term for it.  Once I picked it up, I knew right away what it was and I calmed down a little.  After they hooked me up with an ostomy during surgery 3 years ago, the doctors placed this seton in my anus to hold things together.  I don’t feel any different than what I did before this thing fell out, no pain or anything.  I kept it and took it to my doctor to see if I need it replaced.  She told me as long as everything feels okay and there is no pain or anything, I shouldn’t need it replaced.  That’s one positive thing that came out of this whole experience!

Now for my jaw issue.  I got an MRI of my jaw back in February and took it to my oral surgeon to get it read and see what he says about it.  Not good news.  He told me that he hasn’t seen anyone this bad in 35 years!  Leave it to me for this too!  Why not go big??  He told me that basically my ball from the ball and joint on each side of my head is gone.  There is just a disk there, it has been worn down to the nub.  Also the cartilage that should be between the ball and joint is no longer there, it’s only scar tissue.  So what he suggested is that I wear a bottom retainer like thing and that should take the pressure off the muscle and hopefully bring my jaw forward a bit.  Both sides of my jaw are dislocated.  If that doesn’t work, I will need surgery to replace both ball and joints on each side.  I don’t want to think about that option right now – only positive thoughts!

It seems to me that the older I get the more interesting my life becomes.  Never a dull moment here!  I just wish I could take all these bad things and turn them in to something good.  I’m still trying to figure out what my purpose here on earth is.  I try to live a normal life or as normal as I can but it just seems that the harder I try, the more difficult my life becomes.  This disease has really kicked me in the butt but I try to take it one day at a time.  Oh yeah, my doctor told me she was glad that I had another doctor helping her out with me because I was a handful.  I just agreed with her, I know I am.

Chow for now!

My Catheter Replacement (it would only happen to me)!

Hello everyone, I hope you are doing well today!  I just have to write you to tell you my experience with the placement of my new Hohn catheter.  It is a doozy (of course I would have it no other way)!

So, remember the last post when I said I was a bit nervous because I was getting my old catheter replaced with a new one without putting me out?  Well, obviously I had a right to be, my sixth sense kicked in…I get to the hospital and they call my name.  I go back and put a gown on and lay on this bed.  They tell me what they are going to do, but I’m still a bit nervous.  This is one of the weird parts – they have me get up and walk to the surgery room and hop up on the table.  One of the doctors put a dressing over my head just enough to see the catheter opening. He then precedes to tell me he is going to deaden it a bit and I told him “How about a lot?”

After the area is deadened (it hurt a lot during this time), he preceded to take the old catheter out and place wires in to mark its place.  It was this time another very unsettling thing happened – the doctor stopped the procedure and looked at the nurse and asked her which petal he should use!  She paused for a moment and told him to try the right one.  Then she stopped him and said “Yeah, I believe it is the right petal.”  Okay, by this time I am freaking out because I am wide awake and can hear all this going on!  My little heart is going pitter patter very fast!  After all this was over, the other nurses congratulated the one nurse and she told them she hadn’t done this in a long time!  So, the one doctor leaves and another comes in to stitch me up.  By this time, the numbing medication was wearing off and I yell “Ouch!”  The doctor then numbs me up with more shots and he proceeds to finish up.  The nurses help me off the surgery table and walk me back to the recovery room bed (weird).  At the same time, as I got off the surgery table, I looked down and saw splatters of blood all over the floor – my blood! It’s over now, so I get dressed and leave – drove myself home.

So I get home and look at what was done.  By this time the numbness is wearing off and they didn’t give me any pain meds for this.  I forgot to ask because it was numb when I left.  I could definitely tell a male placed this catheter in because it went right under my bra strap.  I cannot have the strap over the catheter or it will eventually rub itself out.  So my next step was to call my Home Health nurse because the dressing was falling off me and I was in a lot of pain.  She looked at my catheter placement and by this time I was black and blue.  It had looked like someone beat me up!  She changed the dressing and couldn’t give me anything for the pain unfortunately.  For the next week, I was taking 3 Tylenol every 4 hours and was in a lot of pain.  The HH nurse called the hospital and told them about the pain and severe bruising.  They said the bruising was from all the shots they gave me to numb me.  Nothing they can do, just wait it out!

If I ever have to have this thing replaced again, I will definitely tell them they will have to knock me out first!  There is no way on earth I will go through all this pain and suffering just to have it replaced!  The first catheter didn’t cause half this pain nor did it ever bruise but of course they gave me pain meds for that one!  I also had to go to the mall and buy a couple of strapless bras so the strap wouldn’t rub the catheter out.  It will get some getting used to wearing strapless bras constantly but I guess that’s the price I have to pay in order to keep myself healthier!  I am taking one day at a time and it is getting better now but I still have a long way to go to get back to where I was with the old catheter.  I feel as if I took one step forward and two steps back!

Chow for now!

 

 

Never a Dull Moment!

Hello everyone!  I hope everything is going well your way.  In this post, I would like to give you an update from older posts as well as some new things that have popped up.

  This past week I found out from my last blood work that my iron count is still really low (28).  The normal range is 40-140. I’m not sure what is going to be done with this yet. During this time, I decided that I would try and decrease my Entecort steroids down to one capsule a day because I was feeling better and I don’t like to be on these any longer than I have to.  Steroids have many side effects and the longer you are on them, the more damage they can do.  Boy, was that a mistake!  From the day I dropped down to one capsule a day, I started feeling really fatigued and sluggish.  A couple of days had passed then all of the sudden it hit one day really early in the morning.  Let’s put it this way, I had to muster enough energy and strength to take Bella to school and afterwards I went straight to the couch and didn’t move for the rest of the day (until I had to pick her up).  I somehow figured out what went wrong and quickly took the maximum amount of steroids I could take (3 capsules a day).  The next day I was feeling a little better and by the day after that, I was back to my old self.  So now I realize that one capsule was not enough and to not do that again for some time now.  I was doing good with 2 capsules so maybe after I get better with 3 again I will try to get back down to 2.  This is a prime example of taking this disease one day at a time – you never know from day to day what this disease will put you through.

A couple of days later, I was to take my daughter to a basketball homecoming 3 hours away near my hometown.  Everything was going well until we were getting ready to leave.  We were on the gym floor talking to people and I just turned around and seen nothing but a basketball coming right for me.  I didn’t even have time to put my hands up to protect myself and the basketball was aimed right at my catheter of all places. It got me good!  I was scared to look at the catheter because in my mind, it had fallen out.  I asked my aunt and uncle to look for me and everything was still intact.  It hurt, but I think it scared me more than anything.  I went to my aunt and uncle’s house and texted my home health nurse to tell her about my incident.  She told me when I got home to flush it with my saline wash and heparin to see if I had damaged it in any way.  I did and everything went through okay.

May 2016

The next day, I hooked myself up to my TPN nutrients and everything went through fine, however, the next night when I hooked myself up to a dehydration saline bag, nothing went through.  The infusion rate is suppose to be for 4 hours and I finally took it off at 6 hours and there was still a full bag.  The next day my home health nurse came to draw blood from my catheter and she couldn’t get any blood out of it.  She tried everything she could but nothing would come out for her.  She ended up drawing blood from my arm instead.  When she left, she told me she was going to call the doctor and suggest I get a new one put in because she thought I may have damaged it when the basketball hit me.  Also, my heart rate was back down to 63 bpm.  I guess I should call my doctor and see what the plan is.

In the mist of all this, my TMJ has come back this week and I finally made an appointment with an oral surgeon.  After examining me, he told me he wanted me to get an MRI done to see where the cartilage is in my joints, if any.  He told me that he believed I had a dislocated jaw joint and believed I had this since I had orthodontics in my teen years!  I have been walking around with this all that time and had no idea.  I did know something was not right, and it’s been like this for years but didn’t know it was dislocated!  Never a dull moment here!

Monday morning I will go to Barnes in St. Louis and get a new Hohn catheter put in.  They told me that they are only going to numb me up.  I am kinda nervous about this because when I first got this one, they gave me a twilight where I was awake but didn’t care and now they are just going to numb this one?!  Please say a little prayer for me during this time.  I am so glad that I did not accept that job offer from a month ago.  I’m falling apart again!  Remember to take this disease one day at a time because if you don’t, you will go crazy and it will get the best of you!  Do not give this disease the satisfaction!

 

Chow for now!

Ringing In The New year

Hello everyone, I hope the holidays went well for you!  Mine was great but my health wasn’t too great..I would like to blame it on all the great food I ate during that time but something else had reared it’s ugly head.

In my last post I had told you the blockage pains had come back and I am now taking the Entecort (steroids).  About one month later, I still wasn’t feeling great but couldn’t figure out just what it was.  I was feeling very fatigued on top of all this.  One day while my Home Health nurse was at the house, I was telling her my symptoms and how I was feeling.  When she took my vitals, she found that my heart rate was 50 bpm.  It is normally 75-80 bpm and she acted alarmed that it was this low.  She told me that this was probably the reason why I was feeling fatigued.  She then called my primary doctor and told her what was going on.

The primary doctor ordered some blood work and told me she would like for me to wear a heart monitor for two days to record what is going on with my heart.  The blood work showed that I was moderately anemic and that I definitely had something going on with my heart.  My heart rate during the two days ranged from 41-144 bpm. I’m still not sure what they are going to do with me about that – I haven’t heard from them regarding a game plan yet. For the anemia, they told me to put more red meat in my diet.  That’s kind of ironic due to the fact that I gave up eating red meat this past summer because it is the hardest meat to digest with my Crohn’s.  I didn’t think about losing iron because of it.  I’m still not eating red meat but I found at the pharmacy this “shot” of iron called Pur Absorb.  It is literally a shot of water infused with iron.  It taste like drinking water from a rusty pipe but if it helps and keeps me out of the hospital, I’m willing to do it!

Just this past week, the job I had before I was laid off in 2012 called me out of the blue.  They offered me another position, full-time and told me they would consider my medical condition.  For 3 days I was really considering going back because it would have been for a lot more money and we could get some bills paid off and go on some great vacations!  I considered the pros and cons and in the end, I had to decline the offer.  I had to consider my health of course, the surgery hanging over my head, my heart thing and the fact that if I did go back to work, I would lose my disability.  The way my health is now, I could be fine for a day, a month or even a year and then one day before you know it, I’m in the hospital for some reason, having surgery or just not able to get up off the couch.  I would then be out of a job and have lost my disability.  It was so nerve wracking for those 3 days though..my brain was telling me one thing as my body was telling me another.  I really would love to get back to work one day but this just isn’t the time.  I still have some kinks to work out!

On the other hand, I am a very spiritual person and firmly believe that everything happens for a reason..this is another reason why I struggled with this decision.  I pray to God all the time to open my eyes and ears and let me see/hear what he wants me to do for my future.  Then all the sudden, out of the blue, this job offer lands at my feet.  Was this some kind of sign or something or was I thinking too much on this?  Also, the same day I declined the offer, I got a phone call from Mercy Hospital in St. Louis inviting me to one of their job fairs for lab personnel!  I did tell God that he would probably have to hit me on top of my head for me to get it as I don’t get subtle hints very well – they kind of fly right over me!

I do feel a little better now but still fatigued.  My heart rate is back in the 70-80s bpm.  I did however just get some more blood work done and I am waiting on those results.  It did feel good that my old job is still thinking of me.  Maybe one day I will able to go back to work and live like a normal person.  I have to take this disease one day at a time and work toward the goal of getting better!

 

Chow for now!

Kelly

Blockage Problems and Then Some

Hello everyone, I hope things are going well with you.  I am sorry you haven’t heard from me in a while – I haven’t been feeling in tip top shape here lately.  My blockage problems have came back and I have some other mishaps along the way.  Here are some details on what have been going on since I last posted.

11/28/2016. After we had Thanksgiving and festivities at my family’s, we came back up to O’Fallon, IL on Saturday.  Saturday night, my husband and I went out to eat at Hooter’s because I was craving chicken wings and we hadn’t been there in a while.  I noticed when I got up the next morning that I hadn’t filled up my bag any throughout the night.  I thought it was weird but I didn’t think much about it.  That next day, we were to have Thanksgiving at the Tyberendt’s house.  I had my fair share of food that day and still did not fill my bag any.  Early the next morning around 2 am, I woke up with severe pains that came and went in waves.  That night, I didn’t get any sleep and was doubled over in a fetal position all night.  Later that morning, I took the Entecort steroids that my new doctor told me to take if the blockage pains ever returned.  I mustered up the strength to take my daughter to school then crashed on the couch the rest of the day.  I didn’t eat or drink anything all day until around 6 pm.  I decided I would try a little chicken noodle soup.  That was not a good decision, I could not keep it in for very long after eating.  That day I took a total of 2 pain pills, 2 advil and my steriods and was still not doing well.  I emailed my doctor to let her know what was going on.  I also had the hydration saline bags hooked up to me so I wouldn’t dehydrate.  The doctor told me I was doing the right things but if I kept having the pains I should see about going to the hospital.  I would rather do everything at home than sit in the hospital room for 3 -4 days doing the exact same thing I’m now doing at home.  The next morning, I didn’t have any blockage pains but I could still feel something wasn’t right.  I did find the courage to eat one scrambled egg that day and a little bit of water.

12/13/16.  So I am now not feeling well but not sure what is going on.  I just feel blah.  At one point I am thinking it may be my blood pressure.  Every night around 6 pm I just crash.  I start getting a huge headache and my face gets flushed.  Last week when I went to the doctor, my BP was 120/73 which is perfectly normal for other people but it hasn’t been that high in ages for me.

12/15/16.  Still not feeling well. I wake up with a headache and go to bed with a headache and have a headache in-between and I’m not a headache person! I have been taking beau coups amounts of Tylenol just to subside it a bit. I also found out from my home health nurse that I have a low heart rate (50).  She called my primary doctor and let her know my symptoms I have been having and that my pulse is usually around 80 but now it is 50 for some reason.  My primary told me to get some blood work done and to go to Mercy’s Heart Hospital in St. Louis and get a heart monitor put on me. I feel tired all the time, hence the heart rate I guess.. All this right before Christmas! Also, my food isn’t tasting right either. Unless I have a lot of salt on my food to taste or it is very sweet, I don’t taste it.

12/16/16.  I did get some information back on my blood work from the doctor..I am moderately  anemic.  This has gotten worse from the slightly anemic that I was.  The nurse told me to eat more red meat!  I told her that I cut red meat out of my diet this past summer due to blockage problems.  Obviously I should have compensated for taking the red meat out of my diet.  Now I need to increase my iron in my diet.  Damned if I do, damned if I don’t!  Also, my magnesium was on the low side so she wanted me to get some over- the- counter magnesium topical cream. This cream is suppose to soak through your skin.

Please say a little prayer for me as I am going through all this stuff.  I haven’t yet found out what the heart monitor reads, I guess my doctor will call and let me know the results.  I will keep ya’ll informed of any new news. I know I have to take this disease one day at a time but sometimes it is so difficult to remind myself.  I need all the encouragement I can get right now, so please send me a shout out and let me know I’m not alone with this disease..

Chow for now!