Drawing Upon the Power of the Atonement of Jesus Christ

For the last few months I have really been focusing on the Atonement of Jesus Christ and how it has blessed my life.  I was taught about the Atonement of Jesus Christ from an early age, but to be honest I never fully knew how to access the power of the Atonement of Jesus Christ and use it in my life.  I didn’t understand just how powerful it is and how it could change and bless my life until about a year ago when I hit rock bottom and felt all hope was lost.

For some reason I seemed to really struggle accepting everything that had happened to me the last couple of years (if you don’t know what I’ve been going through, I explain everything in previous posts starting July 2016).  Every night as I tried to fall asleep the events of the past couple of years would play over and over in my head with the same question at the end, “Why did all this happen?”  Honestly I had no peace.  I was frustrated and felt like I wasn’t supposed to get better, and there was a time months earlier when my family and I didn’t know if I was really supposed to make it through everything or if it was my time to go.  I’d be lying if I said I wasn’t stressed. 

With so much going on I felt like I was drowning emotionally, mentally, and spiritually.  I was a mess!  In May 2017, my stress levels hit a very dangerous level.  With everything that had been going on in my life, I started to feel like I was a burden to my family and that was the last thing I wanted.  To be honest it’s one of my biggest fears.  Being so stressed, scared, and starting to feel like a burden, the adversary jumped on board knowing he could influence me because I was at my weakest point.  He whispered to me the solution to my problems, “end your life.”  I was scared and knew it was the wrong thing to do but in my mind I couldn’t be a burden to my family, I just couldn’t.  I listened to the adversary and decided to end my life, believing it was the best thing I could do.  Ending my life would mean that I would finally be free from all the pain (physical, mental, emotional, spiritual) that I had been experiencing and I believed that my family would be better off without me because they wouldn’t have to deal with everything that I had been going through and what I will continue to go through.  After deciding when and how I was going to end my life I got down on my knees and told Heavenly Father my plans.  I told him I knew it was wrong but I didn’t know any other way out and I wouldn’t be a burden to my family.  I experienced a very dark feeling.  I’m sure the adversary was thrilled knowing he was close to destroying another child of God.  I didn’t let on about my plans to take my life and I definitely did not talk to anyone about the things I was feeling and planning.  I didn’t want anyone to stop me.  I was convinced taking my life was the best solution.  A few days after making my decision my stress levels continued to rise and I had the overwhelming urge to just get it over with and take my life.  I even went in to the bathroom to get the pain pills I had planned to overdose with.  As I stood in the bathroom I couldn’t bring myself to grab the pills.  I went back to my room and sat down on the bed.  As I was sitting there this thought came into my mind and heart, “if you take your life you’re not enduring to the end.”  This statement pierced my heart so much and I knew it was from my Heavenly Father. He knew I wouldn’t listen to anyone else but knew I would listen to Him.   I knew that by taking my life I was not enduring to the end and I wanted to show my Heavenly Father that I could endure to the end despite everything I had and would go through.  I no longer felt the need to end my life.

I decided not to tell my family about coming close to taking my life.  I knew how they would react and I just didn’t want them to know.  It actually took several months before I got up the courage to tell them.  They reacted how I expected them to but they also showed a lot of love and concern for me.  My dad and I came up with a plan on what I would do if these feelings came back.  I was grateful to know my family was there to listen and that I could turn to them without feeling scared about how they would react in the future.

After this experience my life didn’t change, I still felt like I was drowning emotionally, mentally, and spiritually.  I still felt like a complete mess and was an emotional wreck at times!  I finally got to the point where I had had enough!  I wanted to feel peace in my life.  I wanted to accept everything that had happened to me.  I didn’t want to be burdened with the question of “why” hanging over my head.  So I finally turned to the Lord and starting relying on the Atonement of Jesus Christ to take away my pain.  I wasn’t quite sure how to access the power of the Atonement of Jesus Christ but I knew I had to figure it out.  I started praying and told Heavenly Father I was done feeling like I was drowning and that I needed help, the help that only the Atonement of Jesus Christ could provide.  I knew I would be helped but I also knew that my pain wouldn’t disappear overnight. 

It took months for the Atonement of Jesus Christ to work in my life.  Slowly my heart was changed.  I no longer had the events of the last couple of years playing over and over in my mind every night.  I finally came to accept everything that had happened to me.  I no longer felt like I was drowning emotionally, mentally, and spiritually.  I started to feel alive and grateful.  I started to understand why things happened the way they did, and I can honestly say that I’m grateful for the way things happened.  Sure I still have some unanswered questions but it doesn’t matter.  I have learned so much from my experiences and if I had to experience them all over again, I’d do it in a heartbeat because of the experiences I’ve had and the things I’ve learned.  Trials are meant to refine us and I feel like I have been refined.  I came to understand Heavenly Father’s plan for me and His role in my life.

My testimony of the power of the Atonement of Jesus Christ has grown so much within the last five to six months.  I know that the Atonement of Jesus Christ is real and very powerful.  I know that if we turn to our Savior, He will help and heal us.  He provided each of us the gift of the Atonement by suffering in Gethsemane, dying on the cross, and rising again the third day.  Because of the Atonement of Jesus Christ we have access to the Holy Ghost, who helps us to change.  I am grateful for the peace that I have felt and the change of heart that I have experienced.  I know that if we turn to our Heavenly Father and our Savior, Jesus Christ, they will help us through every trial and challenge we face in this life.

Living with a CHD

Since February is heart awareness month and February 7^th-14^th is specifically congenital heart disease (CHD) awareness week I thought I would write a post on what it’s like living with congenital heart disease.  If you go back in my blog and read some of the first blog posts, it will go into a little more detail about my congenital heart defect(s). In short, I was born with multiple heart defects, from patent ductus arteriosus (PDA), a small ventricular septal defect (VSD), atrioventricular canal (AV canal- I just had a common atrium instead of having both a right and left atrium), all of the valves in my heart were leaky, and other abnormalities with my heart caused by heterotaxy polysplenia syndrome (a rare birth defect that involves the heart and the other organs in the body.  I have multiple spleens and the other organs in my body don’t sit in their normal anatomical position).

My childhood was not normal, at least not in the sense like it was for other healthy kids my age.  I don’t remember a lot about my childhood but I do remember having to take medicine for heart failure twice a day, not being able to run around with the other kids because I would get so tired (my normal oxygen sats without exertion were between 83-85), and going to lots of cardiology appointments.  I loved my cardiologist and loved going to Primary Children’s Hospital so I didn’t mind all the appointments.  At my appointments I would normally get my favorite nurse who always did my EKG which made it nice.  There were times when I hated going to my appointments because my cardiologist would make me do stress tests. Running on the treadmill was SO tiring! I normally didn’t make it very long because I just couldn’t handle it.  After one particular stress test when I was seven, my cardiologist decided it was time for me to have a heart cath to determine if it was time to repair my AV canal. 

I had my heart cath sometime in the Fall of 1997.  This heart cath turned out to be a traumatic experience for me.  I was awake when the nurses put my IVs in, which was not a fun experience in and of itself and then I woke up during the procedure.  I can remember opening my eyes and seeing the doctor who was preforming the heart cath.  He noticed that I was awake and so he told me that he was almost done, and that he had tried going through my right femoral artery but discovered that the path to my heart on the right side was blocked so he had to change and go in through my left side.  I was terrified that I had woken up during the procedure so I closed my eyes and don’t remember waking back up until I was in recovery.  I can remember that while I was in recovery, my cardiologist came in to get my parents so they could see the images of the test and hear the results.  The results showed that it was time for me to have my AV canal fixed. 

I had my first open heart surgery on January 27, 1998.  During the surgery my AV canal was fixed and I now have two atriums instead of just a common one.  My mitral valve was also repaired during the surgery.  My surgeon left my aortic valve alone hoping that it would last until I reached adulthood.  I remember waking up in the ICU with a tube down my throat and my hands tied to my side so I didn’t pull anything out.  My parents were there when I woke up and communicating with them was very difficult since I was intubated.  Back then they didn’t take the tube out of your throat as quickly as they do now.  I just remember being miserable with the tube in and was SO happy when they finally took it out!  I don’t remember much about my ICU stay, which is probably a good thing.  I know I was in pain because having your chest cracked open and then put back together is no picnic.   My brother and sister came to see me the day after my surgery.  It was hard having them come in to see me because they were crying and I knew it was hard on them.  I knew they didn’t want to see me this way and I had to reassure them I was fine. 

I had the surgery on a Tuesday and the hope was that I could go home that following Sunday, but that didn’t happen.  The electrical system in my heart was interrupted during surgery so I had to keep the pacer wires that had been placed after surgery in a lot longer than planned in order to help my heart beat.  So my stay in the ICU was longer than everyone had anticipated.  I was in the ICU for 4-5 days before I was moved to a regular room (still with the pacer wires in place) and then I had to stay there for another 5-6 days while my heart was monitored and the decision to place a permanent pacemaker was made.  I had my pacemaker placed nine days after my open heart surgery.  Normally a pacemaker is placed on the left side of your heart but because of the anatomy of my heart mine was placed on the right side.  I was able to be released from the hospital the day after my pacemaker was put in.  After ten days in the hospital I was so excited to go home. 

Since that surgery twenty years ago, my heart has been doing really good.  My oxygen sats are now in the high 90’s and I haven’t had too many complications.  I was blessed to have my aortic valve last until I was 20 years old before it needed to be replaced (that is a whole other story that I will write about later).  I have had my aortic valve replaced twice now, with the last time being a year ago this month.  So far my mitral valve has held up and I am hoping that it will continue to hold, but if not then I will have it replaced as well.  I haven’t had to take any special medicine for my heart in years which is a blessing.  The only thing I take is a full strength aspirin to help keep my blood thin since I am not allowed to take any other kind of blood thinner because of my history with bleeding.  I am on my third pacemaker with the hopes that it will last another 2-3 years before it needs to be replaced again.  I see my cardiologist twice a year where I have a pacer check, EKG, and a complete echocardiogram.  Problems with my heart can happen quickly so I never know how my clinic visits are going to go. 

For me, living with a CHD isn’t a big deal.  To be honest it’s made me who I am today.  It instilled in me my passion for medicine and a thirst to learn as much as I can.  Most days I completely forget that I have heart problems.  I have learned to live with the occasional chest pain, getting tired easily, not being able to exercise as much or as hard as others can, feeling my heart stop for a second before my pacemaker kicks in and it starts beating again, and dealing with the symptoms of severe aortic stenosis or regurgitation when they come.  I’ve had to make sacrifices and adjustments to my life because of my heart and other health problems but it’s not a big deal.  I know that I will have to have more heart procedures done and I know that I have at least one, possibly more open heart surgeries down the road.  It’s something that I have accepted, and while I’m not looking forward to them I know that I can handle it.  I was given this life for a reason and I am grateful for it.  I know with all my heart that I won’t have these problems forever.  I know that one day I will be resurrected and that my body will be made whole.  I look forward to that day, although I will miss my scars and the sound of my heart (seriously it sounds AWESOME)!

In the ICU after my first open heart surgery.  The box down by my leg was the pacemaker that I had to carry around until I had my permanent one put in.

These are the first two pacemakers that I had. The one on the left was put in February 1998, and the one on the right was put in July 2006.  The pacemaker I have now was placed December 2011.  I use my pacemaker about 32% of the time with it mainly being at night.

My Experience with an External Fixator

The process to start correcting my left foot so that I could walk again started on September 8, 2017.  I had two amazing orthopedic surgeons performing my surgery.  They went in and lengthened the tendon to the muscle that was overpowering the others and causing my foot to turn in.  The tendon was lengthened in hopes that the muscle wouldn’t be as powerful anymore.  I also had my really high arch cut.  Those two things alone relaxed my foot and it straightened out.  My foot was then put into an external fixator that would move my foot to the correct position in a matter of weeks to months depending on how well my foot responded.  Initially my surgeons told my parents that I would probably only have to be in the external fixator for 7-8 weeks. 

Adjusting to having this HUGE frame on my foot was pretty hard.  The things I was able to do before now seemed to be impossible.  It took me a couple of weeks to figure out how to do things again.  I finally got up the courage after a few weeks to try using my crutches a little more.  It was an adjustment because my frame was so heavy and really weighed me down.  It was hard figuring out how to balance with this added weight, especially when my balance was already off.  But I managed to figure it out and started using my crutches a little more around the house.

Attached to the external fixator were six struts with numbers on them.  Each day these six struts had to be moved to the number indicated on the program that was given to me.  My initial plan was for 34 days. The first ten days of this plan consisted of moving the struts so that my ankle joint would become distracted (pulled apart).  This phase was painful but thankfully pain medicine helped ease it.  I saw my orthopedic surgeon every week where x-rays were taken and the frame was evaluated. Some of my visits consisted of strut change outs, which is where the old strut was replaced with a longer or shorter one depending on what the program indicated. 

After having the external fixator on for a month it was decided that one of the wires in my heel had plowed through my bone and needed to be removed.  I wasn’t thrilled about this news but I was expecting it because I was told at the beginning that my bones were really soft and the wires couldn’t get a good hold on the bones.  I went in for surgery a couple of days after I was told that the wire needed to be removed.  I had the surgery done at the Orthopedic Center down at the University of Utah and all I can say is that I love that place.  The staff are amazing and I had the best anesthesiologist!  He used to be the head of the cardiothoracic anesthesiology so he knew some different tricks to get my IV in since I have really hard veins.  For this surgery I did not have to be put all the way under which was awesome.  I was given a nerve block and then just sedated.  I didn’t feel anything and it pretty much felt like I was out the entire time but waking up in recovery was so much quicker.  I ended up having the one wire taken out of my heel but then I had three more wires put in, two in my heel and one more up in the forefront of my foot.  So instead of having a total of four wires in my foot I now had six, three in my heel and three in the forefront of my foot.  The hope was that these additional wires would help support the other wires and hold onto my bone so that everything would actually move where it needed to be instead of just plowing through.  I was given my second correction plan which was for about 14 days with the first six distracting my ankle joint again because it didn’t stay distracted (pulled apart) the first time. 

I was really hoping that after the second correction phase I would be able to get the frame off, at least that’s what I kept telling myself.  It had been 8 weeks and my foot should have been corrected by then so when I was told it needed to go about another 10 degrees I wasn’t happy.  My third correction phase lasted two weeks and I was convinced that I was going to be able to get the frame off by Thanksgiving.  Unfortunately that dream was crushed at one of my appointments.  I was told that my ankle joint had finally stayed distracted (which is a good thing), but after my case was discussed with different doctors around the country, everyone felt it would be best for my foot to stay in the final position for at least four weeks.  Not the news I wanted to hear!  I left that appointment with my final correction phase that would last a week and then my foot would stay in that position for four more weeks.  I did at least leave that appointment with a surgery date.  My doctor apologized that it was taking longer than what he initially thought but my foot fought the correction which caused setbacks.

 

Waiting for the day for my frame to come off felt like an eternity.  I never thought it was going to get here but it finally did.  I went in to have it removed on December 19, 2017, after having it on for 3 ½ months.  The frame removal was at the Orthopedic Center again so I requested the same anesthesiologist I had in October.  Unfortunately he was working with the residents that day and could not be my anesthesiologist, but they did get him to come and start my IV.  The anesthesiologist I ended up with was just as good and I really liked her.  Just like in October, I had a nerve block and was just going to be sedated.  My orthopedic surgeon was already back in the O.R. when I got there and he was quite talkative to me, which kind of surprised me.  He told me that once I was in my cast I could start being weight bearing and start walking a little bit.  I flat out told him that wasn’t going to happen because I was still terrified that I was going to end up with another sore on the bottom of my foot so I wasn’t going to take any chances.  

The frame removal surgery went great.  My foot stayed in its position after the frame was taken off which made my surgeon very happy because he didn’t know what my foot was going to do.  My foot also had good range of motion which was a positive thing.  While in the operating room my foot was molded so a custom brace could be made to help me when I walk.  It’s supposed to help distribute the weight evenly on my foot and give me arch support.  After the surgery I was put into a cast and sent to recovery.  My surgeon again tried to convince me that I needed to put weight on my foot and that he made sure that there was enough room in the cast that it wouldn’t cause any kind of pressure, but I was stubborn and told him no. So he went to my dad and told him to convince me to put weight on it.

Having the frame removed felt great.  The pain I had been feeling because of the wires and pins in my toes was finally gone.  It was a lot easier to do things and the best part was that I could finally sleep on my side, something I was really looking forward to.  Another positive thing was that I made it 3 ½ months without any kind of infection!  After I had the frame put on back in September I was sent home with antibiotics to start taking when an infection occurred in one of the pin sites.  I was told there was a 100% guarantee that I would get an infection.  Thankfully my dad and I found the trick to being infection free, and that was to just clean the sites once a week.  I would put my foot in the bathtub and we would use my shower head to clean it.  It was something I hated because it was kind of painful but it worked.

During the two weeks that I had the cast on, my dad tried to convince me to start putting weight on my foot and told me that everything would be fine because my foot was now in a straight position and I have almost 100% blood flow in that foot.  After a week or more of being in the cast I finally took a leap of faith and started putting pressure on my foot.  I prayed constantly that I wouldn’t end up getting a sore on the bottom of my foot.  I worked on my balance with my dad and it was really hard.  After not being able to put any weight on my foot for 19 months and then just standing up on it was really hard.  My balance was really bad but as I worked on it each day I started to make a little progress. 

I had my cast removed the beginning of January and I did not have any kind of bruising or sore forming on the bottom of my foot, which I was really happy about.  I was so scared that I’d have another sore which would cause another setback, but Heavenly Father answered my prayers.   Unfortunately the cast did rub against my heel and caused a little sore.  I wasn’t happy about that but it is healing so that's good, it's just slow.  My foot still has a tendency to pull inward but since I have the strength to pull it back into a straight position I may not need to have any tendons transferred, but only time will tell.  After the cast was removed I had a removable splint made that I had to wear while I waited for my brace to be made.  This splint was meant to keep my foot in a straight position but since it was removable I could take it off and work on my balance and start walking a little bit with a walker.  I’ve been working on my balance almost every day and walking a little bit every day as well.  My balance is getting better but I still have a very long way to go!  Hopefully one day I will be able to get to where I want to be with my balance and walking.

Having an external fixator on my foot for 3 ½ months was not easy.  During one of my many appointments one of my surgeons asked me how I was doing psychologically with it.  I told him I was handling it.  It wasn’t easy having it on.  It made things very difficult and having everybody stare at me when I was out in public wasn’t very fun and it definitely made me feel even more self-conscious.  Not only did I have to deal with the psychological aspects of a frame but it felt like everything else in my life that could go wrong started to go wrong.  Toward the end of October I found out that my left external iliac artery was severely narrowed to the point that it could become occluded (become blocked), which would not be a good thing. The thought was that when I had my aortic valve replaced back in February 2017 with the TAVR procedure it affected this artery and scar tissue started to grow and caused it to narrow. My vascular surgeon went in and did an angioplasty (a procedure to restore blood flow to an artery) on my external iliac artery.  Because of the type of balloon that was used to stretch the artery out, I had to be on a blood thinner for ten days.  This was very scary for me and my parents because I have a history of bleeding and we believe that blood thinners are what caused my subarachnoid hemorrhage back in 2016.  It was a very long ten days but thankfully I did not have any bleeding happen, although the headaches I dealt with each day were not fun.  Now I just have to be evaluated every couple of months to make sure that this artery doesn’t start to narrow again.  If it does I will have to have a stent put in to keep it open.

Despite the pain, stress, and at times depression I am grateful for my experience with an external fixator.  I hope to never have it again but it did teach me a lot.  It provided opportunities and blessings that I wouldn’t have received without it.  During the 3 ½ months that I had it on I was able to go to the temple a few times.  A couple of times while I was there I was asked by different sisters what happened and if I could do it all over again would I?  The answer to that question is YES!  I would go through everything all over again because I’ve been so blessed.  I wouldn’t trade the experiences I’ve had for anything!  I know without a doubt that Heavenly Father has been guiding me every step of the way.  I can see His hand in everything and it amazes me how everything has just come together.  Sure, it’s been hard and at times more than I feel like I can handle, but life is hard.  It’s not meant to be easy.  If life was easy we wouldn’t learn and grow.  I’m so grateful for Heavenly Father’s perfect plan and the knowledge that I have that I’m not alone in what I go through.  I have a Savior who has felt everything that I have felt.  He knows not only the physical pain I go through but also the mental, emotional, and spiritual pain as well and He is there to help me.  The Atonement of Jesus Christ is real and very powerful.  If we apply it into our lives we can get through anything!

This is what the plan for my third correction phase looked like. Each strut had a different number that it needed to be set to each day. All four correction plans looked like this.  There was an app I had to go into everyday and mark off that I had moved each strut. The app allowed my doctor to go in and track my progress and make sure I moved each strut.  

These are what each strut looked like. There were six of them that went all the way around the frame.

What my foot looked like before the external fixator. My stroke caused my foot to turn this way.

After my external fixator was taken off and my cast removed.  It's not perfect but it's better than it was.

Foot Surgery Correction with TSF

Since my foot surgery ten days ago, I have had a lot of time to reflect on all the events over the past year that have led up to this surgery. It definitely has not been an easy year. I've had a lot of challenges, not only physically but mentally and emotionally as well. It's been a hard year to come to terms with everything and accept God's will and plan for my life. I've experienced things I never thought I would and hope that I will never experience them again. But I have also had some pretty amazing experiences as well and I wouldn't give those up for anything.

Waiting for the framing specialist to finish his fellowship and start working at the University of Utah Hospital was definitely the right decision for me. I have so much respect and admiration for both him and my other orthopedic surgeon. They truly are the best and I know without a doubt that I was led to them because they were the ones who needed to fix my foot. They were both so kind to me in the operating room as the anesthesiologist was trying so hard to place my IV. They didn't mind the delay and were very patient. I couldn't ask for better doctors. My admiration for my original orthopedic surgeon grew that day in the operating room and my admiration for the specialist grew when I was in recovery coming out of anesthesia. He talked to me and explained what happened during surgery (although I was still pretty out of it so I didn't comprehend it all) and then suited up to help with the x-rays that would to be used to help come up with a prescription for my foot. He also came to check on me before heading home for the day and then came again the next morning, which I thought showed a lot of dedication since it was a Saturday.

Once I was complety under general anesthesia my surgeons were able to assess what my foot would do without my brain telling the muscles to contract. Just like I had suspected beforehand, my foot didn't relax. I had figured that since the Botox injections didn't work my foot wouldn't relax under general anesthesia. During the surgery some of the tendons in my leg were lengthened and my high arch was cut to lower it. Those two things alone helped relax my foot and it automatically started to straighten out. Then my foot was put into an external fixator called a Taylor Spatial Frame (TSF). My frame comes halfway up my leg and there are three pins that go into a bone in my leg that are holding it in place. I then have four wires that go through the different bones in my foot and then a pin in each of my toes. The pins in the toes are to keep them straight so they don't curl under as my foot is brought up. Attached to this big metal frame are six struts that have to be turned every day.

From the x-rays that were taken both after surgery and during my follow-up appointment a plan was made with a precise prescription just for my foot. This prescription tells us what number each strut needs to be turned to each day. By turning these six struts everyday they will straighten my foot and bring it up so it will be in the correct position. I only have about 25-30 degrees more to go before it is to the position the doctors want.

I have been lucky so far and really haven't had a lot of pain with this frame. I lost most of the feeling in my leg and foot about two years ago, most likely because of the stroke. If I had feeling I believe that I would be in more pain. I can feel the deep muscle and tendon pain though and that hasn't been very fun. My surgeon believes that I'm already starting to feel the straightening because they had to do so much stretching and straightening during surgery. He also believes that once the turning of the struts start I will be in more pain. I have to be careful with what kind of pain medicine I take since I am on a 325 mg dose of aspirin every day and we don't want my blood to get too thin. I only take over-the-counter pain medicines because I refuse to take stronger pain meds for several reasons. So far I have been able to manage with just Tylenol or nothing most days. I've only had to take a naproxen once when I just couldn't stand the pain and Tylenol wasn’t cutting it. I start turning the struts this week so I may have to adjust the pain meds so I can handle the increased pain.

This frame is HUGE and really is a pain. I bump it into everything! Getting in and out of the house and car is a pain, so I try not to leave the house if possible. I have had to make several adjustments to my life because of this frame. I've had to rely on my parents a lot more and am learning that there are many things that I just can't do by myself. It's kind of been a humbling experience for me because I've always been one who is very independent. I've always had a hard time asking for and accepting help but now it seems like I'm asking for help all the time. It's frustrating but good for me.

I'm not exactly sure when I will be out of this frame. I have my guesses but it also probably depends on how my foot responds. I still have a goal to be walking by Christmas and I really hope that it will happen.

Year Marks

April and May 2017 are year marks for me.  April marked a year since I was in the neuro critical care unit at the University of Utah hospital with a subarachnoid hemorrhage, and May marks a year since I’ve been in a wheelchair.  This past year has been one of patience, healing, acceptance, and understanding.  It’s been a long year and I’m glad it’s behind me, but I have the feeling that the next year is going to be just as hard.

Trying to understand and accept that I’ve had two strokes (either 11 months or 5 months apart, we’re not sure which) and that they have caused damage to my body has not been easy for me.  I’ve gone over everything that has happened to me in the past two years almost every night, and I still can’t believe everything that has happened.  I’m learning to accept all the side effects from the strokes and know that my life is forever changed.  I’m not going to be able to do everything I once was able to do and know that adjustments and sacrifices are going to have to be made. 

As I have mentioned in past blog posts, damage to my left foot has occurred because of the strokes.  My muscles contracted and my left foot turned in and is now deformed.  As my foot was turning in last year, too much pressure was put on the ball of my foot which ended up causing an ulcer.  That ulcer is what initially put me in a wheelchair.  It took six months of aggressive treatments to get that ulcer to heal.  Thankfully it did heal, as the doctors were not sure it would because of the poor blood flow in my left leg and foot.  It took me a couple of months to figure out and come to the conclusion that once the ulcer was healed I still would not be able to walk because of the position of my foot.  Pretty much it was like déjà vu from when I was nine years old and had the same thing going on with my right foot.  I knew that in order for me to be able to start walking again I had to have surgery on my foot.  It took some time but I finally found the right orthopedic surgeon for me and I have been very impressed with him.  I feel like because I started seeing him everything else just fell into place, and for that I am very grateful.  Heavenly Father has a plan for me and this is all part of it.

My complex medical history has made my orthopedic surgeon want to bring in another surgeon who specializes in orthopedic framing.  This surgeon is finishing his fellowship back east but will be practicing here at the U in September.  My surgeon wanted me to wait if possible for this specialist.  This specialist happened to be out here the beginning of May, so I was able to meet with him.  He asked me what my goals were and then a plan was made.  My goal of being able to walk again is doable but it’s going to be a long process.  I will potentially have between 2-3 surgeries on my foot, possibly more depending on how everything goes.  Everything also depends on how my foot reacts when I am under general anesthesia, and my brain isn’t telling my muscles to contract.  I will most likely have tendon lengthening and tendon transfers done and then my foot will be put in a frame for 2-3 months.  During that time I will have to adjust the different struts on the frame and it will move my foot back into a straight position, or as straight as they can get it.  I will also have to have a chunk of bone removed to help lower my arch.  After that I may or may not have to be in a brace (I’m hoping not).  I will then start extensive rehab and will hopefully get back to walking.  The specialist told me that when I have the frame on there is a 100% guarantee that I will get an infection at the pin sites (not a comforting thought).  He told me that I will be in a lot of pain and that I need to prepare myself mentally for it.  He told me that had my goal been to run, that wouldn’t be possible.  In order for me to be able to run I would have to have my leg amputated.  Thankfully that is not my goal, so no amputation is necessary.  My surgery will more than likely happen in September sometime, although I am hoping that this specialist will be able to come out sooner to do the surgery so I don’t have to wait so long.  Only time will tell.  I’m anxious to start walking again, but scared at the same time because I don’t know what my limitations are going to be.

This past year (especially the past several months) I have been able to see what side effects the subarachnoid hemorrhage has caused.  My short term memory has been affected and it’s been pretty frustrating.  I’ve noticed though that some days are worse than others.  I really started noticing and piecing things together several months ago when two different things happened. First, I asked my sister a question and then a minute or two later I asked the exact same question, she gave me a look and I realized what happened.  Second, I went to check something out on my phone and literally two seconds later I couldn’t remember what I was going to do.  So frustrating! This happens when I teach my youth in Sunday school but thankfully my youth are amazing and understand when I can’t remember a question they asked or something that we were just talking about.  Not only is my short term memory bad, but I have a harder time concentrating and processing things. 

I feel like the past year has been an emotional roller coaster for me.  My emotions have been all over the place.  Some days I would be just fine and other days I was a mess.  I didn’t know if I could handle everything that I was having to go through or if I’d be able to handle everything that was going to come in the future.  I was upset with everything that had happened and didn’t know if I could keep going on.  There were many times where I let fear take over my life instead of faith.  When life got to be too much, I would just cry and start pouring my heart out to my Heavenly Father.  Those times when I have felt the lowest are the times when I have really felt my Heavenly Father lifting my burden off my shoulders.   Mosiah 24:14, in the Book of Mormon says, “And I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions.”  I have a strong testimony of this scripture!  I know with all my heart that Heavenly Father has lifted my burdens and made them easier to bear. I am so grateful for the gospel of Jesus Christ and the knowledge that I have.  I wouldn’t have been able to make it through everything that I’ve been through without it.  

Surgery #20

Back in August 2016, I started to realize that once the sores on my foot were healed I wouldn’t be able to walk because the stroke had turned my left foot inward.  Coming to this conclusion wasn’t easy, I had been denied the ability to walk for months and I desperately wanted to walk once the sores were healed.  So I started the process of finding an orthopedic surgeon who could fix my foot so I would be able to walk sooner than later.  I found an orthopedic surgeon who I liked but after two visits with him, he recommended that I see an orthopedic surgeon at the U because they were more skilled in treating someone who has had complications from a stroke. 

I called to make an appointment with the surgeon that was recommended but he was booked up until December.  I didn’t want to wait that long so I asked if the chief surgeon (who had also been recommended) had any openings sooner.  It turned out that he had had a cancelation, so I scheduled my appointment with him for a couple of weeks later. 

I met with my new orthopedic surgeon the second week in October and he presented a plan that made more sense than what the previous surgeon had said.  The plan was to frame my foot (put it in a halo) for six weeks and slowly bring it up to the right position, and then he would lengthen my Achilles tendon and do some other tendon transfers to keep my foot in place.  The goal is that this procedure will allow me to get up and walk again, but I may have to be in a brace the rest of my life and will possibly not be able to walk without the help of a crutch.  I’m determined though to do whatever it takes so I can walk on my own without a crutch to help me.   During my visit with this surgeon my dad and I explained my complicated medical history and as a result he wanted me to try a Botox injection first and see a vascular surgeon. 

I met with a vascular surgeon who examined me and then set up some different tests that would determine what percentage of blood flow my leg and foot had.  She didn’t seem to be concerned and figured the blood flow in my left leg and foot would be about 70%, which would be good enough to do foot surgery and heal from it.  I had the test a week later and got the results the same day.  Unfortunately I only had about 50% blood flow in my left leg and foot which isn’t good because there’s no guarantee that I would heal from any kind of foot surgery.  The CT scan that was ordered showed that my left superficial femoral artery is blocked.  My vascular surgeon was quite surprised by the results because my right leg which has 70% blood flow looks worse compared to my left leg.

 

I also met with a physical medicine and rehabilitation doctor who gave me an aggressive Botox injection to see if it would help the muscles in my leg and foot loosen up.  He wasn’t positive that it was going to work but I had to at least give it a month to see.  At the end of the first month I went back in to see the PM&R doctor who confirmed what I already knew.  The Botox injection had not worked.  The doctor believed my only option now was foot surgery.

After talking with my orthopedic surgeon, he informed me that he won’t do any kind of foot surgery until the blood flow in my leg and foot is improved.  If the foot surgery were done without an increase in blood flow there is a good chance that my foot wouldn’t heal from the surgery and I could end up losing my foot entirely.  After talking and meeting with the vascular surgeon it was recommended that I have my left superficial femoral artery bypassed in order to increase blood flow. 

I was scheduled to have my artery bypassed on December 27, 2016.  The morning of my surgery I went in and as I was waiting to be taken back to the O.R., the anesthesiologist came in and told me that he did not feel comfortable putting me under anesthesia because I have severe aortic stenosis (narrowing of my aortic valve).  Being put under anesthesia for a long time when you have severe aortic stenosis is dangerous.  There is always the chance that I could have had a stroke, heart attack, or worse while on the operating table.   Another echo was performed and then all the doctors involved talked with my vascular surgeon.  After they looked at the notes and talked with my cardiologist it was determined that it would be best to try and coordinate having my aortic valve replaced through the TAVR (trans catheter aortic valve replacement) procedure and do the femoral artery bypass at the same time.  So the surgery was canceled and I went home. 

I wasn’t very happy about having the surgery canceled, but after talking with my dad, he helped me realize that it was a blessing.  I am grateful for the doctors who didn’t say “let’s just do the surgery” but instead determined what was going to be best for me. 

On January 9, 2017, I met with the TAVR team down at the University of Utah Hospital.  The team consisted of two thoracic surgeons, and an interventional cardiologist.  The first surgeon that I met didn’t impress me.  He hadn’t read my case and didn’t know why I was there.  After we told him why I was there, he presented his plan.  He talked about putting the new valve inside my old valve (called a valve in valve).  But since the valve I had was small it would make the valve even narrower.  He wasn’t sure how it was going to work.  I wasn’t very confident in him and wasn’t sure if a TAVR was the right thing for me.  I met with the second heart surgeon, Dr. G, next and he impressed me from the beginning.  He had read over my case and knew exactly why I was there and had a plan.  His plan made so much more sense than the plan the other surgeon had suggested.  It was still considered a valve in valve but the new valve would sit higher up in my aorta.  I next met with the interventional cardiologist, who I also really liked.  He was very familiar with my case and had been in contact with my cardiologist over at Primary Children’s Hospital.  His plan was the same as the Dr. G’s.   They planned on coordinating with my vascular surgeon and also bringing another doctor over from Primary Children’s Hospital.

I went home from meeting with the TAVR team not sure how to feel.  I couldn’t believe that it was time for me to have my aortic valve replaced for the second time.  It had only been 5 ½ years since I had it replaced the first time.  When I had it replaced back in 2011, my heart surgeon told my parents that my new valve should last between 7-10 years if I was lucky.  But it could also last shorter or longer than 7-10 years.  We were all hoping it would last closer to 10 years, but the odds weren’t exactly in my favor because I was young and a girl which meant the valve could calcify quicker.  After I had it replaced in 2011, I was pretty confident that I would get married and have at least one child before I had to have it replaced.  I was wrong though, I didn’t get married and don’t know when or if it will ever happen.  I knew that since it had to be replaced again I had to make sure I was doing the right procedure at the right hospital. 

I learned the first time around that it’s very important to find the right hospital and the right surgeon to do my heart surgery.  I started researching the procedure, the doctors, and the different hospitals that have done TAVR’s before like crazy.  My dad did his research and we would talk about what we found.  I emailed my doctors with lots of questions and I’m sure that after the third email they were sick of me.  I knew that I had to do my homework before Heavenly Father would give me an answer.  After three weeks of researching and talking with my dad constantly, I decided that the TAVR procedure was the way for me to go.  When I came up with this answer I took it to Heavenly Father who confirmed that this was the way to go.  The next step was to figure out where to have it done.  I had my aortic valve replaced back in 2011 at the Cleveland Clinic.  I knew that they were the #1 heart center in the country and that they would do a good job, but my circumstances were different this time around and I wasn’t sure if I really needed to go back to the Cleveland Clinic.  If I wasn’t considered high risk for open heart surgery and needed to have open heart surgery, I would have gone back to them in a heartbeat.  After doing more research and talking with my parents I felt like the University of Utah would be okay.  I also took this to the Lord and the answer I got was that it didn’t matter where I had the procedure done at.  With that answer I went ahead and set up a date that I could have my combined surgery. 

My surgery date was scheduled for February 22, 2017, and honestly it couldn’t get here fast enough.  From the time I met with the TAVR team up until the day of my surgery I started to get more symptomatic from my severe aortic stenosis.  It’s crazy how fast things can change.  I went from having energy to being very tired very quickly.  I would wake up exhausted, be tired all day, and go to bed exhausted.  Doing the littlest things wore me out!  Severe aortic stenosis is not something to take lightly, especially when you become symptomatic. 

The day of my surgery arrived and surprisingly I was a second case which meant that I didn’t have to be to the hospital until 10am.  Once I got checked in I was taken back to get prepped for surgery.  The TAVR team and my vascular surgeon came in to talk to me about the surgery, and I was very happy to hear that Dr. G would be the heart surgeon putting my new valve in.  I met with the anesthesiologist, who I really liked (this doesn’t happen very often).  He gave me medicine to make me feel loopy and calm, then he took me back to the O.R.  Once in the O. R. he put in my first arterial line (which is not a pleasant thing to have put in).  Once the arterial line was in I was put to sleep and didn’t wake up until I was in the cardiac ICU five hours later. 

The surgery went great!  Since I was having a combined surgery I had all the doctors from the TAVR team, my vascular surgeon, and another interventional cardiologist who came over from Primary Children’s Hospital who dealt with congenital heart defects in children and adults.  I had a HUGE team, for which I am grateful.  My vascular surgeon started the surgery by exposing my femoral artery and then the TAVR team took over and ran a catheter up my artery and then the new valve.  The TAVR procedure normally takes anywhere from 1 ½-2 hours, but they were able to place my new valve in an hour.  I was definitely watched over during this procedure.  I know that the surgeons had help from the other side of the veil.  Everything worked out perfectly.  They were able to place the new valve the first time, and my old valve helped secure the new valve.  I have no regurgitation (leakiness) which is a huge blessing! Plus the pressures in my aortic valve went from 40+ (severe) to 14 (really good)! We learned after the surgery that my valve was placed without the help of an echo probe.  My chest cavity is small so not everything would fit at the same time.  After my new valve was in, the vascular team took over and were able to use one of my own veins to bypass the portion of my blocked femoral artery.  My vascular surgeon talked about bypassing two different areas but only ended up having to bypass one area.  Another huge blessing!

Waking up from surgery wasn’t as bad as it would have been had I had open heart surgery.  When I wake up from open heart surgery I normally have a breathing tube down my throat and an extremely sore chest.  I LOVED not waking up to either of these things!  I wasn’t in a lot of pain either and only took Tylenol to take the edge off.  My throat was so sore though, it was pretty swollen because of everything that had to be put down it.  I also wasn’t able to chew on ice chips or drink anything because I had to have a swallow test done first and that wouldn’t happen until the morning.    

Getting any kind of rest in the ICU is pretty much a joke.  There were so many people coming to check on me constantly.  My nurse came in every hour to check the pulse in my foot (which was so strong) and give me different medicines.  He even came in at 3 in the morning to give me a heparin shot! Then someone from the lab came in to get blood three times during the night, and even housekeeping came in.  I think I only got about three hours of decent sleep that night.  On top of everyone coming in to check on me, my mind wouldn’t turn off.  Normally I don’t have problems with this after surgery but since I wasn’t on any strong painkillers that make me tired, I was wide awake. 

During that night in the ICU I couldn’t help but feel so lucky and so blessed.  I could feel my Heavenly Father’s love for me and it was so strong.  I knew that He had answered my prayers and the prayers of everyone who had been praying for me.  I knew that He knew my fears and that He made sure everything went exactly how it was supposed to during surgery.   I knew He had heard the pleadings of my heart to have my great grandparents and my uncle be with me throughout my surgery.  I know they were there because I felt them.  The love and assurance that I am His daughter was very strong that night.

I ended up being in the ICU for less than 24 hours before I was moved up to the cardiovascular unit.  While waiting for a room to open up I did my swallow test and was finally allowed to start drinking and eating.  I was also able to get out of bed and sit in a chair.  I had my arterial line and my central line taken out, which felt so good.  Once I was transferred up to my new room I was able to get out of bed more and start a little cardio rehab.  All of my doctors were happy to see that I was doing so well and they didn’t see any reason why I couldn’t be discharged the next day.  I had to fight off physical therapy, who tried to get me up and walking.  It didn’t matter how many times we told them that I can’t put any pressure on my foot, they were determined to get me up and walking.  They even got to the point where they said they would put my foot in a brace so that I could start walking.  We had to inform them that my orthopedic surgeon said that if I put any kind of pressure on my foot, I will crush my bones because of the way my foot is deformed.  We finally got them to back off and I didn’t have to deal with them anymore. 

Before I was able to be discharged I had to have another test done (called an ABI) on my leg and foot to get a new baseline for where my pressures were now.  In November the test showed that I had 50% blood flow in my left leg and foot.  Now I have 100% blood flow!  I love having great blood flow in my leg and foot.  It’s been amazing to see the progress the scars from the sores on my foot have made in just a week.  Before the surgery they were still pretty red and had some scabs on them.  Now the scabs are gone and they look great.  I was discharged from the hospital about 48 hours after I was admitted.  It was a very fast hospital stay considering everything that was done.

I have been doing great at home.  My leg is still pretty sore because the incision is close to a foot long and I’m pretty bruised and swollen.  Ice has been my best friend and really helps.  I haven’t had to take a lot of pain medicine which is good, but when I have it has mainly been Tylenol.  I feel great and can’t believe that I had a major procedure/surgery done last week.  I am able to go out and about like nothing ever happened.  The next step for me is to have foot surgery, but I’m not sure when that will happen because there are still some major factors that will play into it.

Ulcers and Tissue Death

When I came out of my back surgery in November 2015, my parents noticed that I had two puncture wounds on my left ankle.  I didn’t have them before I went in for surgery so we know that I got them while in the operating room.  We’re thinking that either my ankle was bumped or that the O.R. team tried to put an IV there.  We didn’t think much of it and expected them to heal.  But unfortunately they didn’t heal, instead they grew together and eventually became an open sore. 

I found a wound doctor in Layton that I started seeing the beginning of March.  A lot of different things were tried to get this ulcer to heal.  I had many forms of collagen put in, a snap vac that put negative pressure on it to help divide the cells faster, and my blood was drawn and then put into a machine and eventually formed into a clot that was then put on the wound.  All of these attempts didn’t work.  It just seemed to get deeper, which was pretty frustrating.  In May I was put into a walking cast in hopes that it would stabilize my foot and keep my ankle from moving so that the ulcer would have a chance to heal.  My foot was checked a few days after the first cast was put on.  It seemed to be working and I was put back into a cast, this time not having my foot checked for a week.  It was pretty hard walking with the cast because my balance was still off from everything that I had already gone through. 

My parents went to Hawaii for twelve days, a day after I got my second cast, to help my sister, who was having her third child.  Since I had only been home from the hospital for a few weeks my parents felt it would be best if I stayed with my grandparents while they were gone.  My grandma took me to my appointment to get my cast off and check my foot.  I wasn’t prepared for the news that would come.

After the cast was taken off, my grandma looked at my foot and noticed that I had a bruise on the bottom of my foot.  I had her take a picture of it since I really couldn’t see it.  I figured it was just a bruise and that it would eventually go away.  My doctor came in and looked at my foot.  What looked like a bruise wasn’t a bruise.  I was told that somehow the blood flow had stopped in that area and killed the tissue.  The doctor proceeded to cut away the dead tissue and sent it off to have it analyzed.  It didn’t bleed when he started cutting and I couldn’t feel a thing, which surprised my grandma.  I lost the feeling in my foot a year ago after everything started, so not having feeling in my foot has been good and bad.  My doctor told me that when I came back in a couple of days that they would do a test to check the circulation in my foot.  I was then told that I could not walk and needed to be in a wheelchair.  I couldn’t believe this had happened especially while my parents were gone.  Thankfully I still had a wheelchair at my house from the last time I was in it.  We picked it up and then drove back to my grandparents’ house where I called my parents to let them know what had happened. 

A couple of days after my initial doctor’s appointment I went back in to have the test to see how much circulation is in my foot.  I was told that if it was low then I would need to see a vascular surgeon.  During the test, which took ten to fifteen minutes, I just kept hoping and praying that the numbers would be high.  The test came back showing that I only have 20% blood flow in my foot.  That’s really not good, it should be a lot higher.  I was very disappointed and didn’t know what was going to happen.  I didn’t know if my foot would heal with that poor of circulation.  My doctor went and called a vascular surgeon that he knows, explained my situation, and then immediately sent me over to see the vascular surgeon.  I saw the vascular surgeon who did another test on me and then asked me about my medical history.  He couldn’t believe that someone so young had so many health problems.  He set up a CT angiogram for that Friday where the vessels from my heart down would be looked at.  He believed that I had some sort of vasculitis.  I had the angiogram done and it showed that the vessels in my legs are narrow and some have aneurysms in them.

It took a few days, but once I processed everything, I couldn’t believe this had happened to me.  I wasn’t happy and didn’t understand why Heavenly Father was going to make me go through this again.  I was very upset with Heavenly Father and my faith started to waver.  This was the second time I ended up in a wheelchair because of pressure sores since I was 10 years old.  I didn’t want to go through the emotional pain again.  I became very self-conscious about being in a wheelchair when I was ten because of what people said and how they acted around me.  That hasn’t changed.  I dreaded people seeing me in a wheelchair because of my self-consciousness.  I didn’t want to be looked down on or judged.  I didn’t even want family to see me in my new situation because I was scared and felt vulnerable, which is really stupid but it’s how I felt.  The first Sunday I was in a wheelchair it was my stake conference, and since I was able to watch it online I told my grandparents that I wasn’t going to go to church with them.  In reality I could have watched my stake conference and gone to church with my grandparents but I was so scared and didn’t want anybody, including my aunt, uncle, and cousins seeing me.   I know I’m loved by them and it wouldn’t have been a big deal but like I said, I was scared. 

My brother and his family came up to my grandparents’ house for dinner that Sunday night which helped.  My grandma knew that I was feeling down and that having my brother and his family over would help me.  I was nervous about how my nephews would react to seeing me in a wheelchair.  They didn’t care and showed me more love and acceptance then I could ever imagine.  They helped boost my spirit that night. 

Even though I‘m in a wheelchair I still try to be as independent as possible.  Because of past experiences I have a hard time letting people help me.  I don’t want to feel like I’m a burden so I tend to just do things myself, even if it’s difficult for me. 

A week after receiving this devastating news I started hyperbaric treatments.  I was told that I would start out doing twenty treatments to see if it was working, if it was I would continue with the treatments.  During hyperbaric treatments you lay on a gurney and are sealed into a pressurized chamber where you can either sleep or watch movies.  Hyperbaric treatments is where you breathe in oxygen that is three times higher than normal oxygen.  Having more oxygen in the blood helps in wound healing.  I would go to hyperbarics five days a week for about two hours each day. 

A couple of weeks after I started hyperbaric treatments a new sore developed on my fourth toe.  When this new sore was discovered I was pretty upset.  I kept feeling like things were getting worse, not better.  Around the second week in June I had a wound vac put on the sores on my ankle and bottom of my foot.  A wound vac is a machine that you wear 24/7 that is like a vacuum and puts negative pressure on the wounds.  A piece of foam is put over the sores and then taped down with a special kind of tape so there is a good seal.  With so much negative pressure being put on the sores it will suck up the drainage into a canister.  The negative pressure is supposed to help the cells divide faster and help the wound heal.  I had the wound vac on for two months, having the dressing changed twice a week.  When I had the dressing changed I was able to see how much or how little progress the wound had made during the week.  I believe that it did its job and helped the wound on the bottom of my foot get smaller.  I didn’t really notice it doing a whole lot for my ankle sore.

 

In the middle of July as my wound doctor was checking the wound on the bottom of my foot, he noticed that the capsule covering the joint of my pinky toe was exposed and had slipped.  I was sent to see a podiatrist down in Salt Lake.  As I saw this doctor I was told that I needed to have a graft that contained shark cartilage and cow collagen put in the wound.  This procedure would have to be done in the operating room and would have to be done that week.  The doctor told me that if I didn’t have this done then the tendon would die and the death would move into my bone and I would need my toe amputated.  I had the surgery on Friday, July 15, 2016.  It was a very simple surgery and I didn’t have a lot of pain from it.  After a few weeks this graft did what it was supposed to do and covered the open capsule with granulated tissue that would then start to fill in with skin.  This graft helped my ankle sore and the sore on the bottom of my foot make significant progress. The sores started coming to the surface and shrinking.   

Toward the end of August my wound doctor decided that I would benefit from an epidermal graft.  This is where a machine is placed on the thigh, it heats up the skin and forms tiny blisters.  The blisters are then sliced off and put on the sores.  The blisters are supposed to help promote skin growth.  It takes anywhere from two to six weeks to see results from this type of graft.  For me it took about four plus weeks to see significant improvement. 

Finally at the end of September the sore on my ankle healed.  It had been so stubborn for so long I didn’t know if it would actually heal.  I was very excited when I saw that it was healed and saw that the sore on the bottom of my foot only had a small sliver left before it was fully healed.  I was anxious to stop hyperbaric treatments but knew I couldn’t until I was fully healed.  One week later, the beginning of October, the sore on the bottom of my foot was healed.  I was so excited because the doctors weren’t sure if it would heal or not.  I was finally able to stop hyperbaric treatments after having 79 of them. 

Being stuck in a wheelchair and not being able to walk because of the sores has been very hard on me.  There have been many times when the emotional pain has been too much and almost paralyzing.  I have been so scared of what people think when they see me, that I find myself making excuses to avoid certain situations.    I have tried to tell myself that it doesn’t matter what people think of me, all that matters is what Heavenly Father thinks of me and what I think of myself.  Unfortunately I can’t always convince myself of this. 

 When the emotional pain gets to be too much I don’t always feel like I can talk to others about what I’m feeling, so I just hold it in until I am alone.  There have been many nights where I have literally cried myself to sleep because the emotional pain is too much and I can’t keep it in anymore.  During these times I have prayed for strength to make it through another day.  It’s been amazing to see and feel the strength that Heavenly Father has blessed me with to go through another day and then another.  I don’t think I would have been able to make it as far as I have without the help from a loving Heavenly Father. 

My journey is not over yet and I know there are more challenges ahead of me, but with help I will overcome them.  A lot of the fears that I have haven’t subsided and still haunt me on a daily basis.  But I am confident that everything will work out how it is supposed to as long as I keep my faith strong and trust in my Heavenly Father’s plan for me.