New Year’s update

Hello everyone, hope ya’ll had a very Merry Christmas and a Happy New Year’s!  Sorry I have been in somewhat of a hiatus lately, just trying to get through the holidays.  There isn’t a whole lot going on with my health but there are some things I would like to mention.

Back in December, I had gone to a wedding.  During the reception, there were some people out on the dance floor looking as if they were having a really good time.  I was sitting at a table and watching them laugh and carry on.  Someone who knows me quite well and that I haven’t seen in ages came up to me and told me that the Kelly he knew would be the first person on that dance floor, no doubt about it.  Truth is, he was right.  I would be the first person on that dance floor, without a care in the world back when this disease hadn’t yet consumed all of me.  It’s as though most of my fun had been sucked out of me.  I just have so much to remember and worry about with all that is currently going on with my body.  I can’t just spend the night somewhere because I have to pack all my TPN supplies and then an extra set of ostomy supplies in case the bag that is on me should have a blowout.  I can’t plan anything that involves going in the water because of my catheter dressing.  I’m just not the carefree person I used to be any more.  I try, and I try my best to be fun loving and outgoing but where it used to come naturally, I have to try my best to block out worries and have a good time.  Sorry for the pity party it’s just when others see what I feel it just confirms my fears.

I also had a lung scan performed in December to see if I could get off my Warfarin.  I read the results online before I went in to see the doctor but wasn’t sure what he was going to do with this report.  The report read that the clot was still there as before, however, no new clots were present.  I, as well as my home health nurse figured he would keep me on the Warfarin until the clot has dissolved.  The day of my appointment, the Hematologist told me “congratulations, you can get off your meds!”  I then asked about the clot that is remaining.  He said the clot is surrounded by tissue and is going nowhere.  He then told me that there is a small possibly that the clot could come loose and go somewhere!  I didn’t have a warm-fuzzy feeling when I left his office..I got a second opinion also and they told me the same thing.  I know me, and if there is a small possibility the clot could come loose, it will!  

 All in all I have been chugging along pretty good, just little hiccups here and there.  I did read in an article that there are natural probiotics in Tequila of all things.  I have been tempted to take a shot a day, but I really do not like Tequila very much!  Maybe I will and get back to ya’ll and let you know how it works!  Currently, I have a bad cold and I’m hoping and praying it doesn’t turn into pneumonia (it has many times before)!  Of course my husband gives the cold to me and he is over it within 3 days versus when I get it, it lasts for 2 weeks due to my compromised immune system!  All I can do is take one day at a time and hopefully come out better!  Please keep me in your prayers as I will keep you in mine.

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

2nd round with the blood clot

 

Hello everyone, hope things are going well your way!  My life is a little better now (knock on wood) but I have gone through another ordeal since we talked last.  In this post I will tell you what is currently going on in my life!

I’m going to say it was a month ago when one night, out of the blue, after eating supper, I started not feeling so well.  However, that night I promised my daughter that we would go to the movies.  I started feeling nauseous before we left for the movie so I took a zofran before we left.  During the movies, I started having diarrhea and missed a lot of the movie!  Also, for some reason both my arms started aching badly, not the muscle but in the bone.  It was late when we got back so my daughter went straight to bed and my arms started aching more and more by the minute.  I tried to go to sleep, however, I could only sleep 30 minutes at a time before the pain in my arms would wake me up.  I got up to walk around to see if there were any shortness of breath and I could breath okay but my heart just ached and it was beating faster than normal.  I also felt warm so I checked my temperature and it was 100 degrees.  I walked the floor for a while before I took a pain pill just to get some sleep..before I went to sleep, I wrote my husband a note telling him that if something happens to me, this is what I was experiencing and this is what I did for it!

The next day, my Home Health nurse came to change my dressing and draw some blood.  I told her what I experienced the night before.  She had to call my primary doctor to tell her about my PT/INR so she mentioned to her what I told her.  My Primary doctor called me later and asked if I could get an x-ray at Mercy Hospital in St. Louis then come to her office for a visit.  So off to St. Louis I go to get the x-ray!  At the hospital, I overheard the radiology technicians discussing the x-ray so I knew it wasn’t good before I got to the doctor’s office, I was just hoping it wouldn’t be too bad.  At my doctor’s, she told me that the x-ray showed what she thought looked like pneumonia.  She took a look at it again and told me it could also be another clot!  She wanted me to go to the ER at Mercy and get some more tests ran to determine what exactly it was.

I got in pretty fast when I mentioned I was there because my doctor thinks I may have another PE blood clot!  Anyhoo, another test was ran.  Since we now know from the previous post that I cannot have a CT Scan done because the dye made my right kidney go into failure, they gave me an alternate test.  The technician told me to put this mask over my mouth/nose and hold it tight so that it creates a seal around my face.  She then sprays this stuff into the mask via the air hose.  Supposedly I was to hold this mask tight to my face for 5 minutes.  OMG! I could not breathe and was hyperventilating!!  I lasted for a good 3 mins and I told her that I couldn’t breathe!  She let me cheat a little and let some air in.  There wasn’t much air coming through that mask!! Finally the test was over and they told me I had a small clot.

 

I was admitted but this time it wasn’t critical that I stay in bed for some reason.  The doctor’s believe that since my PT/INR was below the therapeutic range for three weeks in a row, my body had a chance to form another clot.  This time, the doctors’ main goal was to get my PT/INR up to where it is suppose to be (between 2-3).  They had me on a pretty high dosage of Coumadin and gave me Lovenox shots in the stomach to get my PT/INR up.  I finally left after 4 long days in the hospital with a PT/INR of 1.7 ( since it was moving upward, I talked them into letting me go)!

Once I got out, my Primary doctor told me that she could no longer take care of my Coumadin dosage because it took more time than she had to regulate me so she referred me to a Hemalogist to help.  During my first visit with this doctor, he degraded me to the point where I almost walked out.  As I proceeded to tell him my history with Crohn’s Disease and PE blood clots, his head must of been in the clouds.  I don’t think he even heard a word I said to him!  He started asking me questions about my Crohn’s meds like if I’ve taken this or that to control it.  This medicine he mentioned is medicine I took back in 1998!  I’ve had Crohn’s Disease for 21 years and have tried everything currently out there.  If he would have listened to me in the first place, I wouldn’t have to repeat myself!  Then he asked why the doctors haven’t put me on something like Eliquist or Xalelto.   When I told him they don’t know how much of that I would absorb since I have Short Gut Syndrome, he just looked at me with this big grin like he didn’t believe that they would say that and I was lying to him!  That’s when I almost got up and walked out..He just looked at me and told me to take 7mg and Coumadin and get tested in 2 weeks!  I did speak up and told him that I was currently getting tested twice a week and I at least wanted it tested weekly.  He agreed.

Since then, my PT/INR has been everywhere and I hope it gives him hell!!

I do have to say that my Crohn’s Disease hasn’t really been bothering me that much lately.  I probably just jinxed myself!  Although I have had some pain on my right side, it could be much worse.  Thankfully only one system at a time is acting up and not both…yet!  I guess the only thing to do is to take one day at a time.  Oh yeah, I did stop taking my hormone pill because they said that may also be the cause of the clots so now I am in full-blown hot flashes again!  I guess I would rather have the hot-flashes instead of the clots!!  Until next time..

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!

My Recent Trip to the ER (Why Me?) part I

Hello everyone, I hope everything is going well your way.  I have had an interesting couple of weeks to say the least.  Sit back and let me tell you a story..

Well, just when I thought nothing else could go wrong..it did.  For the past month I have been feeling very fatigued – I mean I was fighting to get through the day.  Of course this is a big symptom of having Crohn’s Disease so I didn’t think much of it when it happened.  My next symptom was my aching chest and back (I tried so hard to get my daughter or my husband to rub my back but they declined; it turned out to be a blessing in disguise).  I also developed a low grade fever with all this.  It was then that I thought I could have pneumonia, as I have had this so many times and I thought I knew the symptoms well.  Boy, was I wrong on this one – there is another culprit out there with the same symptoms that I had..I will tell you the story now.

On March 29th, all the symptoms that I have been feeling started to come together and escalate. I had a low grade fever, my chest and back was aching and I felt like poop.  I told my husband that I was going to call the doctor the next day.  I called my doctor first thing in the morning and got an appointment to see her later that day.  She knows that I have had pneumonia a few times and therefore she knows what my symptoms are and listens to me when I tell her that it feels like I have it again.  She told me that she heard cackling in my back so she prescribes me a z-pac and sends me to the hospital to get an x-ray.  I was surprised when she emailed me later telling me the x-ray was clear, no pneumonia.

That night, my back on the right side was really aching badly so I put a heating pad on it.  It felt better temporarily but the pain would come back.  Later, around midnight I had gotten up to go to the bathroom and all was fine.  However, when I got up at 3:00 am to go to the bathroom, I could not make it to the bathroom without running out of breath.  I started gasping for air and began panicking!  Somehow I managed to unhook myself from my TPN nutrients and flip on the bedroom light to tell Mark to get up, we were going to the ER.  I stayed in my pajamas and just pulled my hair back in a ponytail and we took off.

 

When we arrived, thank Heavens we were the only people in the ER at that time.  They took my blood and an x-ray was performed.  The x-ray came back negative so they ordered a ct scan to be performed.  By this time, I had 2 IV’s going in both arms!  The ER doctor came back to our room and he looked a little worried (okay a lot)!  He preceded to tell us what was found on the ct scan.  They had found a large blood clot with several smaller ones in the right side of my lung. It had lodged itself near the bottom of my lung therefore cutting off the blood circulation and killing off that part of my lung.  This is called a pulmonary embolism with infarction. Immediately they gave me oxygen and started filling my IV with Heparin to thin my blood and start dissolving the clot.  The doctor told me that they were taking me to the ICU from the ER and I had strict orders not to get out of the bed for anything! They didn’t want the clot to move. This all happened so fast it was like a blur to me.  Before I knew it I had some very good drugs and a catheter in me.  They weren’t kidding when they said I wasn’t to get out of the bed!

I’m going to stop here and make this story a part 2.  I believe people, including me, tend to get bored when the post is too long.  In the next post, I will tell you about my stay and my experiences in the hospital.  Oh yeah, by the way, they said if I had gotten that massage I was sooo begging for, it could have dislodged the clot and the clot could have traveled to my brain giving me a stroke or my heart giving me a heart attack.  You won’t catch me asking for another!!

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!