Monday, February 15, 2016
That's a Wrap!
Fall/Winter...that's a wrap!!
Today was one of those days I was able to squeeze in some moments to reflect on where I am right now. Physically, emotionally, and spiritually.
I am so grateful that the sheets of ice are starting to melt away from my driveway...seeing standing water and mud made my heart so happy. This fall and winter has been one of the best that I can ever remember (physically and spiritually). Emotionally not so much...
But, today I really needed to see the sunshine out, feel the warmth in the air, and see car washes in full swing! Fall and winter are particularly the hardest seasons for me to endure. When my body hurts and gets so cold, I really don't want to do anything. Even with this mild scleroderma winter, it completely messed with my mind and I easily let myself feel inadequate, overwhelmed, sad, frustrated, hopeless, and impatient. This winter I let those feelings control me all too much and I wasn't even in all that much pain. I am so grateful that I have faith and continue reading my Book of Mormon daily. It has blessed me spiritually more than I'll ever be able to describe. Otherwise, without my faith I think I would feel too sick or inadequate to even make it to church or work.
For those who aren't familiar with Scleroderma, a very common trial is flare ups during season changes. As spring is approaching (can't come soon enough), it for sure comes with a price. Flare ups are not fun and consist of fatigue, tremendous pain in my muscles and joints, stiffness, and for me I feel like I've been "ran over."
Even though I can't sleep, I will be up bright and early to greet the sun and finish out this work week with a better attitude towards myself. I'm truly seeing the sun at the end of this cold tunnel!
Physical update...
I'm on a waiting list to see Dr. Tracey Frech who is a Scleroderma specialist at the university of utah hospital. I currently am again on no meds (I really hate them and would rather endure the physical pain than feel "blah" or have headaches I get while on meds). My last appointment with Dr. Call went well. He prescribed me topical nitroglycerin to help with my raynauds disease. Oh my hell, I used it only a few times and was literally going to faint!! I'm not kidding, it caused the worst lightheadedness and migraines :( So again, I went through the winter getting by on ibuprofen and advil on days I just needed the edge taken off. Also, Dr. Call repeated blood work and it consistently shows that my muscle enzymes are elevated but I hate prednisone and everything else so I made another promise to him that I would go on steroid treatment if my muscle enzymes get worse this next draw. My swallowing has stayed about the same...I occcasionally feel too tired to swallow. Like the muscles are weak or tight. Having NO ulcers has been AWESOME this winter. I have only had issues with calcium deposits on both elbows--OUCH!! They are so red and tender. The dryness in my eyes have increased but I use saline drops everyday to help with that. My bones are another story for another day...its really dumb to have 70 year old bones as a 30 year old. I don't know how much longer I can gag down calcium supplements.
To wrap up my thoughts I'll end with this:
Treat people kind. Always!!
I know a lot of people hurting. Be the good!
That's a wrap!!
Love,
Britt
Thursday, March 19, 2015
Not going down without a fight!
I haven't posted an update in FOREVER...I guess it was just too painful and hard to put into words. Being told I was going to have surgery for the calcium deposits and start Chemo for my lungs pretty much threw me over the top...I knew I had to fight. So I have fought a tough fight the last few months. I'm stubborn and told myself if I am on meds then there must be a reason. In my crazy mind I thought that if I go off my meds and fight real hard the problems will go away. I have felt amazing--back to my pre-flare state!! Today I feel amazing! After work tonight on my way home I listened to all my voice mails. I noticed a missed call from Dr. Call's office (my rheumatologist). I knew instantly that something came up in my blood work that I had done as a routine visit on Tuesday this week. I was right--my inflammation levels are extremely high along with my Scleroderma counts. He advised I go in for another blood test and to call back Monday morning. He also said to start back on the steroids. Honestly, I feel so good I could cry at how much better I feel. He did say that my muscle enzymes did not elevate so the muscle wasting disease (myositis) is in remission. YAY! At this time I've decided to continue being med free...like Dr. Call said to me on Tuesday, "with Scleroderma we treat the symptoms that come along. If you feel great then let's not change that by making any drastic changes and ride it out." XOXO Brittany
Sunday, November 30, 2014
If "Plan A" Didn't Work....
Just a reminder, the purpose of this blog is for my documentation. I have to be honest and very detailed so my Dr. and I can evaluate what's best for my health :) I'm doing good though!
I have been in a pretty consistent flare. Some days are worse than others but overall I have pretty much felt like throwing the towel in. In fact there are days I want to lay in bed all day and never get up. But I do get up because I have to (kids ready for school, take care of my baby, teach classes) and that's a blessing!
When people ask me what happens when I'm in a flare its hard to explain. Pain, swelling, stiffness, achy, fatigue, cloudy minded... are a daily occurrences but then times it by 100 and that's how I would describe my flare. I go into a "survival mode" and literally just try to get through one day at a time the best I can. About 6 weeks ago my flare started and this time it has stuck around. I called my rheumatogist and he was able to communicate with my local primary care Dr. and help me. I was able to get a toradol shot to take the edge off and then I started a round of prednisone. I took that along with immuran and all my other meds.
I have been in a pretty consistent flare. Some days are worse than others but overall I have pretty much felt like throwing the towel in. In fact there are days I want to lay in bed all day and never get up. But I do get up because I have to (kids ready for school, take care of my baby, teach classes) and that's a blessing!
When people ask me what happens when I'm in a flare its hard to explain. Pain, swelling, stiffness, achy, fatigue, cloudy minded... are a daily occurrences but then times it by 100 and that's how I would describe my flare. I go into a "survival mode" and literally just try to get through one day at a time the best I can. About 6 weeks ago my flare started and this time it has stuck around. I called my rheumatogist and he was able to communicate with my local primary care Dr. and help me. I was able to get a toradol shot to take the edge off and then I started a round of prednisone. I took that along with immuran and all my other meds.
Did it help?
The first few days taking 3 pills a day I felt no change and wanted to give up. About day 5 I felt better but did experience some crazy drug withdrawal symptoms when I titrated from 2 pills down to 1 a day. I was nauseous, shaky, and panicked. A few days after completing the prednisone I felt good but then I have felt right back where I was :( I also started loosing my hair. And I mean by the locks!! I can only wash and blow dry my hair twice a week or I'm afraid it would really be in rough shape--so a little understanding on the bad hair days would be appreciated ;) I also have had more acid reflux so went on medication for that. I still have fatigued swallowing but usually only in the evenings....haha too tired to swallow is a pretty crazy feeling.
I wake up every morning more puffy and swollen/stiff than the day before. I don't remember being this bad since high school. My fingers look like sausages when I wake up and it takes about 90 minutes for the stiffness to go away. My drs always have me make a fist to determine swelling. I can't make a tight fist most mornings anymore due to swelling and tightness. Here is a picture I took last week when I first woke up. Spencer kisses me every morning before he goes to work and I am usually sleep-talking but he says almost every morning I hold up my hand and say, "Spence look how swollen my hands are. They hurt so bad."
Even my feet are swollen..they don't even look like my real feet at all. The swelling does get better as the day goes on but it used to go almost entirely away after the first few hours of getting out of bed. Its hard to live like this for the majority of the day.
At my Dr appointment I showed him my nail beds. I am getting lots of thickening and dilated blood vessels that rupture (the little black dots in my cuticles). That is caused from lack of oxygen. So Dr. Call decided to try a different medication for my Raynaud's disease called Norvasc. I was on that years ago but I developed such low blood pressure after being on it for a long period of time so hoping I can just take it during the winter and spring then go off it. Basically what it does is block calcium into the smooth muscle cells that line the arteries which relaxes arterial muscles and dilates other arteries of the body. It is a calcium channel blocker.
He also switched my steroid around. I went off Immuran--wahoo (it was a nasty drug that made me feel like a zombie with the stomach flu), and now I'm on Plaquenil-- it blocks inflammation. Since my Scleroderma has flared so has my fibermyalgia. I've been taking an anti-depressant called Effexor which helps take away the overall superficial pain. But, I haven't seen a huge improvement while being on it so we thought we would try one last time and pre-authorize Cymbalta through my insurance (they've denied it 3 times). Good news is that they approved!! Cymbalta is the drug of choice for my situation so this was super good news. I will continue taking Prilosec for acid reflux. Oh and I haven't been getting headaches like I did on nifedipine--yay!
I have been on these meds since November 19th...Have they worked?
Yes--Some! I am not feeling quite as tired. But pain has been super bad in my hands, feet, ankles, knees. My calcium deposits have worsened on my extremities. I had x-rays ordered and they found calcium deposits on the top of my patella and bone spurs on the back. I also have them in both elbows. On my left knee and right elbow the calcium is breaking through the skin and causing lots of pain...Oh my heck can I just hit my funny bone once a day in exchange and call it good? So, during Christmas break I get elbow and knee surgery.
AND...If that wasn't enough to soak up just wait :)
Since I have met my OUT OF POCKET MAXIMUM I requested to get my routine PFT done by the end of the year. That is short for a Pulmonary Function Test (lung function). I do these twice a year for early detection for fibrosis of the lungs called Interstitial lung disease, or Scleroderma can cause also cause Pulmonary hypertension. I have always been 95% or higher on my PFT. I dropped down to 80% lung function. I STILL haven't heard all the details of what the plan is but I am going to really push that we get on top of this. That is a big change in a short amount of time and I am not wanting to watch it drop in the meantime. Drug of choice for this issue is one called Cellcept or else there is Chemo. I will know more about this route later this week when I go in for a med consult. I had no idea you could go on chemo other than for cancer so that's something I have learned.
In the meantime my hands are swollen, my knees ache when I get up from sitting for long periods of time an cannot kneal, my elbows kill--even my shirts rubbing on them hurt, my swallowing is weak, and my hair is falling out...HAHA I'm a bit of a mess!
I truly believe that having something to look forward to helps see the light at the end of the tunnel. I asked Santa for halo hair extensions to help with my thinning hair and I can't wait!! So that's one plus :) But I'm going to keep on going and fighting hard.
Also, I have found SO many people on instagram and facebook who are close to my age with Scleroderma so that has been really neat to see their strengths to help with with my challenges. They are amazing women that help me to keep going. I will blog about them all on my next post :)
Last week I was in a horrible depression with all this news on my knees/elbows then my lungs so I really have appreciated kind words and support. I found this quote and OH MY HEAVENS IS IT TRUE! I'm looking forward to a good week :)
XOXO Britt :)
Monday, October 20, 2014
Because it matters!
On September 20th I anxiously attended my first Scleroderma support group. Until this year I have been completely private and quiet about my health. I would tell about it here or there but never IN much detail. I will be honest and say that after I had Carrington my Scleroderma has "flared" up...which lead me to where I am now. I now see the importance of support, funds, education, and friends. I knew I didn't want to attend by myself. It was BYU's home game so I knew Spencer wanted to go to that and I didn't even ask if he wanted to go with me. Plus, I don't know if he is really ready to understand and experience more than he already does with Scleroderma. My mom has been around people with Scleroderma at national conferences so I asked her to go with me and Carrington. I was so happy that she wanted to go without hesitation. My sister Bailey had work off that weekend and was coming down so I asked her to go with us and she agreed. So, we headed up bright and early.
We went to the Univeristy of Utah Hospital where a staff member directed us to the long walk to the meeting room. There I walked in and first noticed a couple older ladies and then I turned to my left and there was a girl I knew had to be Rachel. She is kind of like the president of the group and I met her on facebook through a mutual Scleroderma sister April Clyde. Stacey Blackham, now Stacey Clyde is a few years older than me--we did drill together and were good family friends but her sister-in-law is April who has Scleroderma. We have become friends over facebook but have never met prior to the meeting. April invited me to the meeting and got me acquainted with Rachel over facebook too. I immediately said hi to everyone then went and gave Rachel a hug. She was in open fingered gloves and you could tell her hands hurt. Most of the people in the room looked a lot like I had imagined. We all have the cute little Scleroderma noses, small mouths, no lips, big teeth, tight skin, and purple fingers. Most of them had a spouse with them. One lady was on oxygen. I was the youngest (I think anyways)--but Rachel may have me beat on that :) My mom was a good one to break the ice and ask around what type they had and a little bit about them. It was interesting to hear everyone's story, current battle, and attitude.
Honestly that's the one thing I noticed right off the bat...EVERYONE had a good attitude. No one complained. The cute little lady on oxygen told us about her right heart cath she had done a few days prior for monitoring pressures in her heart and the only thing negative she said was that it wasn't the funnest procedure. Most of them mentioned about the medications they were on. One was just starting a chemotherapy drug called Cytoxin to slow down lung involvement. She said she was nervous but no one complained. I learned pretty quick that God gave this horrible disease to those who can handle it!! It was such a testimony builder to me that I was not a Scleroderma patient by chance but rather I and the rest of the patients in the room was given it by choice. I have such a love for everyone I meet who has this disease. Nearly all mentioned they couldn't have children. One lady in particular never had children and was also a BYU graduate who had come from New York. One lady I sat across from after I told my spill exclaimed, "My God...I am just amazed to hear how this disease affect everyone so differently!" And that is the truth!
I noticed that Rachel had the exact elbows as I. One she had a bandage over which covered an ulcer. It was crazy how different we all were and yet so much the same. Walking in late came April. She is so cute and full of life. She has one awesome attitude!! I can't believe how amazing she is doing dispite what Scleroderma is trying to do to her after she told her story. She is a warrior. She is brave. She is a wonderful role model. I am so glad I met her and that she has befriended me!
We then watched a webinar about interstital lung disease in Scleroderma patients. It was super informative. It talked a lot about the medication I am on now which is a drug used to treat interstitial lung disease....which I do not have but maybe I will be lucky and not get it :) The one lady on oxygen said she literally woke up one morning and couldn't walk all but a few feet without feeling winded. Prior to that she would walk her dog every day. You never know when it's going to hit but it usually hits hard when it does (at least that's what I have noticed and researched). I think we all left the webinar feeling like each day is so precious. That's why I try to live my good days to the fullest. Carrington was being a little noisy during the webinar so my mom had taken her out. Bailey all of a sudden got up and left to switch my mom. She was gone quite a while. Then my mom came in and sat in on the rest of the discussion. We learned a lot from each other.
Afterwards we planned the Scleroderma Walk/Run for 2015. EVERYONE that reads this please mark your calendar for June 13, 2015 and please participate!! It will be held at liberty park. More details will be made as it gets closer. PLEASE PLEASE PLEASE come! I can't stress enough how much it would mean to me. I don't want you to come for "me" but I want you to come for all my friends I've met and will meet who have Scleroderma. They need the help. They need the support. They need the funds for a cure. I would love all of that too but really they need it more than I do. Utah no longer has a chapter. That's something I want to help change. From what I understand of the situation, patients are having a hard time attending meetings because they have become pretty debilitated. I am doing this for them. I am able to go, work, volunteer on their behalf so please help me out on this! THANK YOU SO MUCH!! I will keep you all updated :)
Anyways, after the meeting as soon as the elevator door closed Bailey started bawling. I gave her a big hug. My mom joined in on this group hug and said Bailey had a hard time. She said, "Britt, I had no idea. How do you do it? You are my hero!" That made me start crying which made my mom cry...so ya a tender moment we had. My mom and I quickly realized how out of the loop Bailey was. She was so young when I was diagnosed and didn't get to be part of my diagnosis and trial stage. The poor girl I think was a tad overwhelmed. So...we ate away our worries, tears, and blues at the gateway for lunch at none other than the blue lemon :) YUM!
We went to the Univeristy of Utah Hospital where a staff member directed us to the long walk to the meeting room. There I walked in and first noticed a couple older ladies and then I turned to my left and there was a girl I knew had to be Rachel. She is kind of like the president of the group and I met her on facebook through a mutual Scleroderma sister April Clyde. Stacey Blackham, now Stacey Clyde is a few years older than me--we did drill together and were good family friends but her sister-in-law is April who has Scleroderma. We have become friends over facebook but have never met prior to the meeting. April invited me to the meeting and got me acquainted with Rachel over facebook too. I immediately said hi to everyone then went and gave Rachel a hug. She was in open fingered gloves and you could tell her hands hurt. Most of the people in the room looked a lot like I had imagined. We all have the cute little Scleroderma noses, small mouths, no lips, big teeth, tight skin, and purple fingers. Most of them had a spouse with them. One lady was on oxygen. I was the youngest (I think anyways)--but Rachel may have me beat on that :) My mom was a good one to break the ice and ask around what type they had and a little bit about them. It was interesting to hear everyone's story, current battle, and attitude.
Honestly that's the one thing I noticed right off the bat...EVERYONE had a good attitude. No one complained. The cute little lady on oxygen told us about her right heart cath she had done a few days prior for monitoring pressures in her heart and the only thing negative she said was that it wasn't the funnest procedure. Most of them mentioned about the medications they were on. One was just starting a chemotherapy drug called Cytoxin to slow down lung involvement. She said she was nervous but no one complained. I learned pretty quick that God gave this horrible disease to those who can handle it!! It was such a testimony builder to me that I was not a Scleroderma patient by chance but rather I and the rest of the patients in the room was given it by choice. I have such a love for everyone I meet who has this disease. Nearly all mentioned they couldn't have children. One lady in particular never had children and was also a BYU graduate who had come from New York. One lady I sat across from after I told my spill exclaimed, "My God...I am just amazed to hear how this disease affect everyone so differently!" And that is the truth!
I noticed that Rachel had the exact elbows as I. One she had a bandage over which covered an ulcer. It was crazy how different we all were and yet so much the same. Walking in late came April. She is so cute and full of life. She has one awesome attitude!! I can't believe how amazing she is doing dispite what Scleroderma is trying to do to her after she told her story. She is a warrior. She is brave. She is a wonderful role model. I am so glad I met her and that she has befriended me!
We then watched a webinar about interstital lung disease in Scleroderma patients. It was super informative. It talked a lot about the medication I am on now which is a drug used to treat interstitial lung disease....which I do not have but maybe I will be lucky and not get it :) The one lady on oxygen said she literally woke up one morning and couldn't walk all but a few feet without feeling winded. Prior to that she would walk her dog every day. You never know when it's going to hit but it usually hits hard when it does (at least that's what I have noticed and researched). I think we all left the webinar feeling like each day is so precious. That's why I try to live my good days to the fullest. Carrington was being a little noisy during the webinar so my mom had taken her out. Bailey all of a sudden got up and left to switch my mom. She was gone quite a while. Then my mom came in and sat in on the rest of the discussion. We learned a lot from each other.
Afterwards we planned the Scleroderma Walk/Run for 2015. EVERYONE that reads this please mark your calendar for June 13, 2015 and please participate!! It will be held at liberty park. More details will be made as it gets closer. PLEASE PLEASE PLEASE come! I can't stress enough how much it would mean to me. I don't want you to come for "me" but I want you to come for all my friends I've met and will meet who have Scleroderma. They need the help. They need the support. They need the funds for a cure. I would love all of that too but really they need it more than I do. Utah no longer has a chapter. That's something I want to help change. From what I understand of the situation, patients are having a hard time attending meetings because they have become pretty debilitated. I am doing this for them. I am able to go, work, volunteer on their behalf so please help me out on this! THANK YOU SO MUCH!! I will keep you all updated :)
Anyways, after the meeting as soon as the elevator door closed Bailey started bawling. I gave her a big hug. My mom joined in on this group hug and said Bailey had a hard time. She said, "Britt, I had no idea. How do you do it? You are my hero!" That made me start crying which made my mom cry...so ya a tender moment we had. My mom and I quickly realized how out of the loop Bailey was. She was so young when I was diagnosed and didn't get to be part of my diagnosis and trial stage. The poor girl I think was a tad overwhelmed. So...we ate away our worries, tears, and blues at the gateway for lunch at none other than the blue lemon :) YUM!
This was my facebook post from that day!
What a GREAT day! I am so thankful for my mom and sister for supporting me today. Although they probably had a lot better things to do than drive up to the University of Utah and be in on a webinar about interstitial lung disease in Scleroderma patients--I am so glad they were there for me! I am excited to be the newest member of the Utah Scleroderma support group. I met 5 AMAZING women who all share a common life with me...the Scleroderma life. It was a day full of mixed emotions and lots of memories flooded me (I've made lots of walks on the bridge that takes you from Primary Children's and the U of U hospital for tests, appointments, and procedures), but I have 5 more reasons to fight for a cure because of my amazing new friends! All of us have a scary battle and I'm glad we are going to battle together! I also was able to stay and help plan the 2015 Scleroderma walk. Family and Friends....PLEASE mark your calendars for June 13th for the Scleroderma walk/run held at Liberty Park!! #scleroderma #raynauds #universityofutahhospital #teal #wearefighters
Wednesday, September 17, 2014
Born Into Heaven
Today has been what you would say as "Just One of Those Days!" I woke up later than normal, extremely tired, unproductive, and foggy-minded. It didn't take me long to realize what today is. 2 years ago our sweet baby was born into heaven. It was an experience that I will never forget. I have had a lot of healing since then but it will always be remembered.
I was ordered some blood work (for clearance) before I could be prescribed a certain medication. They asked me if I could be pregnant and I said no. Law is law--so blood work was ordered. It came back positive. I DID NOT BELIEVE IT AT ALL!! Like 110% new it wasn't possible so I requested a quantitative. And it also came back positive. I was not prepared for that news one bit--in fact I sobbed and sobbed for DAYS! I was mad because this was not in our plans and none the less I would be due during my busiest time of dance so that meant a whole semester off for me. So many things were going through my mind.
As they say time heals and so really it didn't take too many weeks for me to start realizing that everything was going to be ok. But on September 17th like I said our baby was born into heaven. I remember it like it was yesterday...Cache was over to play with Kaden and I just started feeling crappy and it all went from there. It was one of the most emotional things I have ever experienced personally. I'm sure you can imagine the guilt I felt. I never knew I could have so much emotional hurt. So many feelings, emotions, what-if's were racing through my mind, heart, and soul. I wasn't very far along but never knew how attached I could be. It was honestly experiencing a death and I had one hell of a time grieving our loss. At times I thought I was going crazy.
The best advice anyone gave me was from Spencer. He said, "Maybe it's the Lord's way of saying we need to get our lives prepared and ready for another baby." It made total sense and just felt so right.
So the next month we found out we were expecting again. That in itself was a complete miracle. I was originally told that due to my Scleroderma that I shouldn't have or possibly could not have kids. I was put on infertility medication to get Cody. After him we pretty much gave up after trying for over 3 1/2 years and then just a few months of me being in nursing school I found out I was expecting. So getting pregnant so quickly after our loss really did reassure us that God had a plan and it was time for our sweet rainbow baby Carrington. She was the rainbow that came after the storm (at the time we were expecting our heaven baby my life was crazy and out of order). I am so thankful for this experience and all I learned along the way.
I was able to put my families needs first, which was something I didn't always manage well. I learned compassion, love, forgiveness, being in tune with the spirit, forgiving of self, and so much more.
Happy heaven birthday to my sweet baby who would be about 16 months old (if earthly born).
I loved you from the moment I knew you were there.
I am so grateful for eternal families!
I was ordered some blood work (for clearance) before I could be prescribed a certain medication. They asked me if I could be pregnant and I said no. Law is law--so blood work was ordered. It came back positive. I DID NOT BELIEVE IT AT ALL!! Like 110% new it wasn't possible so I requested a quantitative. And it also came back positive. I was not prepared for that news one bit--in fact I sobbed and sobbed for DAYS! I was mad because this was not in our plans and none the less I would be due during my busiest time of dance so that meant a whole semester off for me. So many things were going through my mind.
As they say time heals and so really it didn't take too many weeks for me to start realizing that everything was going to be ok. But on September 17th like I said our baby was born into heaven. I remember it like it was yesterday...Cache was over to play with Kaden and I just started feeling crappy and it all went from there. It was one of the most emotional things I have ever experienced personally. I'm sure you can imagine the guilt I felt. I never knew I could have so much emotional hurt. So many feelings, emotions, what-if's were racing through my mind, heart, and soul. I wasn't very far along but never knew how attached I could be. It was honestly experiencing a death and I had one hell of a time grieving our loss. At times I thought I was going crazy.
The best advice anyone gave me was from Spencer. He said, "Maybe it's the Lord's way of saying we need to get our lives prepared and ready for another baby." It made total sense and just felt so right.
So the next month we found out we were expecting again. That in itself was a complete miracle. I was originally told that due to my Scleroderma that I shouldn't have or possibly could not have kids. I was put on infertility medication to get Cody. After him we pretty much gave up after trying for over 3 1/2 years and then just a few months of me being in nursing school I found out I was expecting. So getting pregnant so quickly after our loss really did reassure us that God had a plan and it was time for our sweet rainbow baby Carrington. She was the rainbow that came after the storm (at the time we were expecting our heaven baby my life was crazy and out of order). I am so thankful for this experience and all I learned along the way.
I was able to put my families needs first, which was something I didn't always manage well. I learned compassion, love, forgiveness, being in tune with the spirit, forgiving of self, and so much more.
Happy heaven birthday to my sweet baby who would be about 16 months old (if earthly born).
I loved you from the moment I knew you were there.
I am so grateful for eternal families!
Thursday, August 28, 2014
The things we take for granted :/
Fall is definitely in the air right now and a pretty hard time for me!
My circulation disease Raynaud's is in a little flair. I am having spasms about 10-12 times a day in both my hands and feet. The spasms I talk about is when the blood vessels constrict and cause my hands/feet to turn purple, dark purple, to white-- then when warmed up they turn bright red. As this happens they hurt and sometimes feel like they are on fire (like when you are warming up from having frozen hands in the winter). They don't burn much anymore--I am pretty desensitized to it but they do ache and become really stiff and the ends hurt. Ulcers can develop due to lack of circulation.
I have a nice little calcium deposit that has erupted through my elbow. Anyone out there who has had calcium deposits will tell you how painful they are! I can't explain it well-- but pretty much like a splinter of glass cutting into you with additional nerve pain in the area. Ouch! I showed my Dr. on Monday and of course they say to leave them alone but I got super brave and dug it out of my elbow tonight. My whole arms shook and literally thought I was going to pass out. It's so hard to teach dance and tumbling when that is constantly being rubbed on so I think it will be better now that it's out. I have one in my knee that I need to get surgically removed sometime. I can't kneel on a certain spot on my right knee.
I also have an ulcer on the outside part of my small toe on BOTH feet. They don't bother me much only during a spasm or when I am dancing--so I guess they do bother me a lot haha. Wish they would heal before the weather turns too cold.
Here are a couple pictures I took tonight so you know a little about what I am trying to explain. My toes are swollen too because of the increased dose of steroids :(
It hurts to dance with these dang toe ulcers so hoping they will heal fast.
I am kind of bummed but another thing that just started Tuesday night is dysphagia (difficulty swallowing). Ya, I wasn't going to say anything because I thought it was just a minor thing but continued again last night and so I woke up Spencer and told him. We said a little prayer that it will improve. I'm sure my mom & liz will freak and be mad I haven't said anything. It's different than when my lower esophageal sphincter was affected and I could hardly swallow any food or water. I can still get food down--it's just that my throat muscles feel really weak so when I swallow I have to really try to swallow hard or even swallow a couple times. My throat feels tired most of the time, such a weird feeling that I've never felt before. I need to call my Dr. on Tuesday and see what he thinks we should do. I really don't want it to get worse and then have other things flare up. Oh the things we take for granted! I would be lying if I said I wasn't worrying just a tad. Dr. Call will probably want to try me again on some kind of a calcium channel blocker called nifedipine but I just don't think I can tolerate the migraines it gives me. Those are getting lots better :)
Tonight my bones ache and I feel chilled.
Tomorrow is BYU football so looking forward to a fun weekend with my little family!
My circulation disease Raynaud's is in a little flair. I am having spasms about 10-12 times a day in both my hands and feet. The spasms I talk about is when the blood vessels constrict and cause my hands/feet to turn purple, dark purple, to white-- then when warmed up they turn bright red. As this happens they hurt and sometimes feel like they are on fire (like when you are warming up from having frozen hands in the winter). They don't burn much anymore--I am pretty desensitized to it but they do ache and become really stiff and the ends hurt. Ulcers can develop due to lack of circulation.
I have a nice little calcium deposit that has erupted through my elbow. Anyone out there who has had calcium deposits will tell you how painful they are! I can't explain it well-- but pretty much like a splinter of glass cutting into you with additional nerve pain in the area. Ouch! I showed my Dr. on Monday and of course they say to leave them alone but I got super brave and dug it out of my elbow tonight. My whole arms shook and literally thought I was going to pass out. It's so hard to teach dance and tumbling when that is constantly being rubbed on so I think it will be better now that it's out. I have one in my knee that I need to get surgically removed sometime. I can't kneel on a certain spot on my right knee.
(couldn't get a very good picture of it...it's a deep sliver wounnd)
Here are a couple pictures I took tonight so you know a little about what I am trying to explain. My toes are swollen too because of the increased dose of steroids :(
It hurts to dance with these dang toe ulcers so hoping they will heal fast.
I am kind of bummed but another thing that just started Tuesday night is dysphagia (difficulty swallowing). Ya, I wasn't going to say anything because I thought it was just a minor thing but continued again last night and so I woke up Spencer and told him. We said a little prayer that it will improve. I'm sure my mom & liz will freak and be mad I haven't said anything. It's different than when my lower esophageal sphincter was affected and I could hardly swallow any food or water. I can still get food down--it's just that my throat muscles feel really weak so when I swallow I have to really try to swallow hard or even swallow a couple times. My throat feels tired most of the time, such a weird feeling that I've never felt before. I need to call my Dr. on Tuesday and see what he thinks we should do. I really don't want it to get worse and then have other things flare up. Oh the things we take for granted! I would be lying if I said I wasn't worrying just a tad. Dr. Call will probably want to try me again on some kind of a calcium channel blocker called nifedipine but I just don't think I can tolerate the migraines it gives me. Those are getting lots better :)
Tonight my bones ache and I feel chilled.
Tomorrow is BYU football so looking forward to a fun weekend with my little family!
Tuesday, August 5, 2014
It's the small things...
The medications I am on really are kicking my butt. I have always been one that could run off little sleep but that has changed. I am REALLY tired. Like words cannot even describe how tired I am. A few weeks ago I started with some anxiety of how I was going to start another school year and survive the 8:00am drop off time. I seriously sleep in until 9-9:30 right now. I just leave out cereal bowls for my boys the night before and their favorite cereal and the TV remote. I am so proud of them for being responsible and extremely understanding. Carrington sleeps in til 9- some mornings longer. I stay in bed until she wakes up. I never feel that I get enough sleep. Anyways enough of that---so I have been desperate to find ways to help gain some energy. Here are a few things I have faithfully done the last 4 weeks and it's beginning to help which I am so thankful for!!
*NO POP...most of you that know me probably don't believe it but yes not even one sip for a month. First 2 weeks were hell--withdraw headaches were killer but I am now at a point where the craving or desire is not there. My joints feel better and I have less headaches :) I try to drink about a gallon of water a day. I mix it up by putting fresh fruits in my water bottle.
*TAKE MEDS ON TIME...I know crazy but I have found if I am very consistent in taking my meds at the same time each day and night it makes a huge difference. I found if I take my morning dose about 6 am (when I am up for a potty break from all the water I drink) then the drowsiness is died down by the time I get up....still sleepy (I never wake feeling well rested) but at least I don't feel zombified. I also found if I take my nightly dose at dinner then I get really tired just before bed and I sleep more sound. I cannot skip doses or I get insanely crazy nightmares that would make anyone cry. I've always hated taking meds but getting more faithful and feeling some relief.
*PRAY FOR HELP...I am the type that when praying I thank more than I ask for special blessings. I have been so desperate for help that my heart and soul has begged for help from my Heavenly Father. I have pleaded to be able to get through the day. My faith has increased. I have received so much comfort from my Heavenly Father.
*GOOD FOOD...My husband will be the first to say I am a crappy eater. I can skip breakfast and lunch EVERY single day and pig out on a huge dinner. I know pretty horrible. I have slowly started changing my eating habits. I still rarely eat breakfast (except every Saturday and Sunday we eat a big breakfast as a family). But I do have a mid morning snack. Instead of a sugar based lunch I am obsessed with these wraps!
I am making all my eating choices to be more colorful and fresh. My boys love them too. We mix it up but basically lunch meat and all the vegetables from the fridge. I've also tried something new the past couple weeks. I've taken my kids grocery shopping with me and they each get to choose a couple fresh fruits and vegetables. It's been fun trying new things and they feel more part of food choices and eat better :) I also gag down the greens from it-works early afternoon. Its disgusting to me and I have tried it an all types of juice and smoothies but it gets me hating it every time I take it BUT it makes me feel good! Love/hate for sure.
*ESSENTIAL OILS...I am a distributor for young living and love it! I have for over a year and always look forward to getting my monthly oils. I also use do Terra and get them through my mom. I could not live without deep blue (topical cream) for pain. I have oils constantly diffusing in my kitchen/living area. I use them on my kids daily. I have too many favorites but purification, lavender, stress relief, and peace and calming are a few of my top picks. I use frankincense daily which is one that can cross the blood brain barrier and detoxify.
*READING...Never in my life have I loved reading books (other than textbooks for school--I LOVE learning about science). But novels have just not been my thing. I always have made an excuse not to read and always saying I am too busy. My mom though got me hooked to audiobooks on audible :) I have read (listened) to several books this summer including: The Birth Order, The Fault in Our Stars, Stopping Stress Before It Stops You, The Bridge to Heaven, The Hiding Place, and The Best of Me. I just started Blackmoore by Julianne Donaldson. I have really enjoyed these books and it's been a blessing in my life to maybe escape the tiredness, stress, or headaches for little bit each day.
So overall I feel like the past 3-4 week have been a little better and I feel a little more encouraged. I still pray for strength and peace.
*NO POP...most of you that know me probably don't believe it but yes not even one sip for a month. First 2 weeks were hell--withdraw headaches were killer but I am now at a point where the craving or desire is not there. My joints feel better and I have less headaches :) I try to drink about a gallon of water a day. I mix it up by putting fresh fruits in my water bottle.
*TAKE MEDS ON TIME...I know crazy but I have found if I am very consistent in taking my meds at the same time each day and night it makes a huge difference. I found if I take my morning dose about 6 am (when I am up for a potty break from all the water I drink) then the drowsiness is died down by the time I get up....still sleepy (I never wake feeling well rested) but at least I don't feel zombified. I also found if I take my nightly dose at dinner then I get really tired just before bed and I sleep more sound. I cannot skip doses or I get insanely crazy nightmares that would make anyone cry. I've always hated taking meds but getting more faithful and feeling some relief.
*PRAY FOR HELP...I am the type that when praying I thank more than I ask for special blessings. I have been so desperate for help that my heart and soul has begged for help from my Heavenly Father. I have pleaded to be able to get through the day. My faith has increased. I have received so much comfort from my Heavenly Father.
*GOOD FOOD...My husband will be the first to say I am a crappy eater. I can skip breakfast and lunch EVERY single day and pig out on a huge dinner. I know pretty horrible. I have slowly started changing my eating habits. I still rarely eat breakfast (except every Saturday and Sunday we eat a big breakfast as a family). But I do have a mid morning snack. Instead of a sugar based lunch I am obsessed with these wraps!
I am making all my eating choices to be more colorful and fresh. My boys love them too. We mix it up but basically lunch meat and all the vegetables from the fridge. I've also tried something new the past couple weeks. I've taken my kids grocery shopping with me and they each get to choose a couple fresh fruits and vegetables. It's been fun trying new things and they feel more part of food choices and eat better :) I also gag down the greens from it-works early afternoon. Its disgusting to me and I have tried it an all types of juice and smoothies but it gets me hating it every time I take it BUT it makes me feel good! Love/hate for sure.
*ESSENTIAL OILS...I am a distributor for young living and love it! I have for over a year and always look forward to getting my monthly oils. I also use do Terra and get them through my mom. I could not live without deep blue (topical cream) for pain. I have oils constantly diffusing in my kitchen/living area. I use them on my kids daily. I have too many favorites but purification, lavender, stress relief, and peace and calming are a few of my top picks. I use frankincense daily which is one that can cross the blood brain barrier and detoxify.
*READING...Never in my life have I loved reading books (other than textbooks for school--I LOVE learning about science). But novels have just not been my thing. I always have made an excuse not to read and always saying I am too busy. My mom though got me hooked to audiobooks on audible :) I have read (listened) to several books this summer including: The Birth Order, The Fault in Our Stars, Stopping Stress Before It Stops You, The Bridge to Heaven, The Hiding Place, and The Best of Me. I just started Blackmoore by Julianne Donaldson. I have really enjoyed these books and it's been a blessing in my life to maybe escape the tiredness, stress, or headaches for little bit each day.
So overall I feel like the past 3-4 week have been a little better and I feel a little more encouraged. I still pray for strength and peace.
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