Wednesday, August 31, 2011

Withdrawl.....

So pain pills stink. I've been on them for over a year now. I legitimately need them but that doesn't make me like them any better. I hate just masking a problem rather than taking care of it. What I'm going to do tomorrow will hopefully be a new beginning for me and my whole family. My doctor had this great plan to slowly wean me off of the pain medicine after my procedures so that I wouldn't have to be in pain while I went through withdrawal. Unfortunately they made a mistake on my prescription and would not fix it so even though my PCP called and my pharmacist called and me chiropractor called, they would still not fix my meds. So basically I'm going cold turkey. It's gonna be rough. The doctors warned me of excessive sweating, vomiting, diarrhea, headaches, shaking, and a lot of pain.
Its brutal and awful but when 2 weeks are over I'll be through the detox and off the pain meds. It will be 2 weeks of hell most likely, but after that I'll be ok.
I know today was pretty bad and the nights always seem a little worse but there is light a the end of the tunnel and it's really close!!! I can't get through anything with faith!

Tuesday, August 30, 2011

August 30, 2011

I'm going through a very rough time right now but I'm praying that tomorrow will make it better. I get to have the first of my two radio frequency ablation surgeries tomorrow afternoon at 3pm! I'm very excited! They say that sometimes it takes up to 2-4 weeks to work and other times you can get immediate relief. I believe strongly that I will be that person that gets immediate relief.Call it faith cause that's what I do. Faith tells me that this treatment tomorrow is going to work and work wonders! I know it!!!


Sunday, August 28, 2011

August 28, 2011

Tonight our dog got bad. For the last 2 weeks he had not been eating. Tonight he could not even get up to go to the bathroom. We had to load him into the van and take him to the 24 hr pet clinic. We waited and waited and they came in and told us that they were confident that he had cancer of the spleen and that he was now bleeding out.

Adam got Scooby when he was a puppy just born. Scooby got him through some rough times. They were best friends, it was his only family out here in Arizona at the time. He really really loved him. This was brutal on him and watching him go through the loss of his best friend was like torture.

The doctor said that it was her recommendation that because of his age and how extremely ill he had become very soon, was that he should be euthanized.
We agreed. We didn't want him to suffer anymore. He had been such a good beautiful dog. They brought him in and gave us a chance to cuddle with him gently and tell him we love him and say goodbye. Then after we had time to say goodbye the doctor came in with her needles of sedation and then the barbiturate shot that basically overdosed him and stop his hear. But he did not feel a thing and it was very peaceful. The last words spoken to him before he died were by his dad and he said "Go Chase those birdies in Heaven boy....." That was his favorite thing to do.

When we told Michael that Scooby went to live with Heavenly Father he said 'he died?" and I said "yes sweetie." and he said "Maybe he is up in the sky with heavenly Father playing on the clouds and chasing birds." Such a sweet spirit he had. He gave me comfort during a very difficult time.

It was peaceful but awful. We had to do it but that doesn't make it any easier.

It did give me a wake up call about my own dog. Since my kids came along but dog ended up living with my mom. I see my dog once a week but when I'm there I'm all about my kids and he barely gets any of my attention. That is going to change right now! My dog got me through the host hellish part of my youth and he is still here whenever I need him, I'm so grateful for the opportunity that I have to show him how much i love him and how much he means to me.

So what I want to leave with everything tonight is: It's NEVER too late........never......

Thursday, August 25, 2011

A Trial & a blessing

Every once in awhile you get hit and knocked down. It's what you do after that that determines if, why or how you get back up. Sometimes its physical, sometimes its emotional. I experienced both tonight.

This morning I was helping my son get ready for school. I had his shirt up over his head and he jerked me really hard. I heard a pop and the pain set in. It was awful! I couldn't hold my head up on my own and I could not move without wincing in pain every time. But tonight I had this scout event. For those of you that are reading this and don't know, I'm a Den Leader in the Cub Scout Wolf program. I LOVE it! Best calling ever and I hate when I have to let them down because of my health issues. So here i am.....barely able to hold my own head up and wanting to cry from the pain. I had been to the doctor earlier and she said that it was pretty bad. She thought after examining me that those discs in my neck that are slipping had actually popped out. So I sat in my car for a minute and said a prayer. I prayed and made a deal that if I went in to this pack meeting and did my very best to make this awesome for the boys & their families and I helped serve in every way I could find to serve, that Heavenly Father would take the pain away so I could get through this evening and get a chance to talk to all the parents etc. Then I got out of the car.....and from the first moment that I put the bowl of food down and said my first "hello" it started to effect the pain in a positive way. Then as the night went on I did as much as I could. I mingled and spoke with all the parents of our scouts and I tried to get people plates so they wouldn't need to get up, and I did dishes....just whatever I could do. And by the time I left the party the pain was gone. Just gone. It's amazing how strong the power of prayer is. It was a really amazing testimony builder to me.

At this party I spoke with a good friend of mine whos' father in law is going to be passing away soon. My friend has a son about 10 years old and because that child is a little awkward with social stuff, his grandpa, that lives near by, became his best friend. So now this young man has to watch his best friend die right before his eyes. He is staying home from school and did not even want to come to the scouting event cause he was scared to leave and not be there at the very end. It pained me so badly to see that, and not just because I'm a compassionate person but because I went through the same thing when I was his exact age. My grandmother .....who was my best friend, set up a bed in the living room, slipped in and out of a coma and I was there for it all. I use to ditch school just to be back there so I could read her favorite stories from the Bible or sing her favorite songs. She loved it when i sang to her. Anyways.....my heart is just breaking for this young man. The death of my grandma/best friend shaped me in so many ways and effects who I am to this day. I'm guessing the same will be said for this young man. I want to take his pain away so badly but I know he has to live it. I'm so grateful he has such an incredible mother to get him through it.

Stories like that really put life into perspective. It makes what we are all going through in our individual lives seem so small. Here I complain about having to do treatments that are eventually going to help make me better, when there is a man dying, and a young man falling apart emotionally because of it. It certainly makes me grateful for what I have, and it makes me deal with everything else a little better too.

We all have our trials. None are too big or too small. I wish everyone could use this blog to put some of their stories in. Make it a little forum for women who need support and love of other women.

Wednesday, August 24, 2011

Faucet Injection #2

Today was my second faucet injection/medial block branch (I think I spelled those right). My husband wanted to take me to the appointment (he took me to the first one) but we couldn't find anyone to babysit the kids and we couldn't take them anywhere cause it fell right during nap time and my youngest is sick. Anyways, I was very blessed cause my visiting teacher and friend was able to take me to my appointment while Adam stayed home with the kids.

I got to see my inst-family in the waiting room. It's so nice to visit with all the people in the waiting room that know exactly what you're going through. There was an older man that has been doing all sorts of spinal treatments for a decade or more. Then there were others who were there for the first time. I actually got to give them advice since this was my second time. It was nice. We would all sit in our chairs with our IVs hooked up and wish each other luck and check on how each other did afterwards. It's amazing to have that support from total strangers from the moment you meet.

This treatment was far more painful than the last. The needles went into a different part of my spine and were also successful! Last week the pain in my back disappeared but my knees and feet still hurt. This week my back still hurts but the pain in my feet and knees went away. So I mark it as a success! They will likely go in and burn the nerves in both areas they treated this week and last.

The doctor told me that last time my tolerance to the pain medicine was amazing to him so this time he doubled + my dose of the twilight medicine. I was totally awake through the whole thing. I was answering questions and talking and i remember everything just fine. It was also very painful. The doctor felt bad but told me he could not believe my tolerance for the medicine. He said that when they actually burn the nerves it will be 10 times more painful than this was so he is putting a note in my file to quadruple the medicine he gives most people. Hopefully that will work! If not I'll just have to live through 20 minutes of hell for 6 months of relief. Absolutely worth it in my opinion.

My little boy looked at my back all bandaged up from the treatment today and kissed it and gave me a big hug and said "mommy....I don't want you to be sick anymore. My kisses can make it all better, can't they? Just like you kiss my owies and make them all better. I don't want you to be sick anymore mommy. Please don't be sick anymore."

Once again....I started balling. It's not fair that my baby has to feel like he has to grow up so quickly. I HATE this disease. I HATE it! I feel so angry sometimes that I am so young and going through this. I try to stay positive but when my baby says things like that and I can't wave that magical mommy wand and make it better for him.....it's not fair. But I HAVE to keep a smile on my face. I HAVE to make this ok for him...for all 3 of them, for my husband, who I know is suffering cause of all this even though he stays so positive.

I am SO determined to be positive and even more than that I am SO determined to beat this! I know that there is no cure, i know that the chemo and the IV treatments are something I will just have to deal with but I can do that. It's the pain.....the pain is what is killing me. The pain is what I can beat! And I WILL! I have to.

Monday, August 22, 2011

My Voice....

I tend to blog on my chemo day cause I'm up all night.

A lot of people have noticed that my voice has gotten more and more groggy. I lose my voice all together regularly. I have so much crap in my throat all the time. I think it's a side effect of the chemo or the pain medicine. I'm not sure. It's one of the most depressing side effects of this whole thing.

Since I was a little girl I LOVED to sing. I was always pretty shy about it. I would sing in church sometimes and I did a couple talent shows and choirs but that's it. I don't have a lot of confidence in many areas but I could sing. I loved it, I was good at it and looking back I really wish I had not been so careless with the talent that God gave me. I wish I had shared it more, but I was so content to sing to my kids. Just being able to sing my babies to sleep, or sing songs in the car as we drive along, dance and sing with them.....it was enough for me. It was fulfilling for me and my kids loved it! They begged me to sing more and more and I would love to sing to them all night. Since this all happened I slowly lost my voice. I had to drop out of my choir at church because I was constantly loosing my voice and couldn't hit the notes that I use to and suddenly I was always off key. Now at bed time when I put my babies to bed we read a story, say our prayers......and then it's time for bed. I can't sing to my kids anymore. It's strenuous and painful and it sounds awful...not exactly comforting lullaby for bedtime.

I tried to do it anyways though. Even though my favorite part of bedtime had become painful, I still tried. I wanted to do that for my babies. It's the best part of bedtime and when I was younger, before kids, I imagined being able to sing my kids to bed every night and for several years I was able to do that but my heart was broken about a week ago. I went to sing Michael to bed and he put his little hand on my mouth and said "no mommy....it's not pretty anymore." and tears right away filled up in my eyes. Kids don't really have sensors. They call it like they see it.

It probably seems stupid to most people but this was my hobby, my talent, and something that I could share with others. This was my favorite way to put my kids to bed each night, and have fun with them during the day and now it's gone...

I hope that it will come back but for now it's gone and I'm heartbroken about it.

I try to stay positive and find silver linings in everything. For this one I'm just going to have to hope and pray it comes back.

Wednesday, August 17, 2011

August 17, 2011

It's a miracle! I firmly believe that Heavenly Father guides doctors and researchers to find cures and treatments.

I went into the surgery office this afternoon. I met some really great people in the waiting room that had been doing these treatments for years. They helped to put my mind at ease. When you meet people that understand what you're going through it's like finding an instant friend.

They called me back and had me get into a hospital gown (so fashionable. haha) and hooked me up to the IV of fluids. Then they took me back and laid me on what looked like a massage table. The doctor pushed the sedation through the IV and I got a little dizzy but didn't go to sleep. They stuck 5 large needles on the right side of my spine and then 5 on the left side. It was painful but it would have been that much worse had I not had the sedation.
The best part was that i felt relief from the pain almost instantly!

The difference between pain relief from pain pills and true pain relief from this treatment was amazing! I wanted to run and jump but I was pretty loopy so I didn't. haha. I was able to straighten my fingers for the first time in a year! I was able to bend my knees, get out of a car without wanting to cry from the pain. It was incredible! The only bad part was that this was just a test run ... a diagnostic test to see if the radiofrequency ablation would work later on. So after about 5 hours of feeling better than I had in a really long time, the pain started to come back. I am dealing with the pain better though because I know that just around the corner....within a few short months I will be pain and pill free! yeah!!! I'm so excited!!!! Thank God for modern medicine! I will thank my Heavenly Father forever and ever!

I still have to do the chemo once a week and the IV treatments once every 8 weeks but finally i can stop taking the pain medicine.

Miracle!

Tuesday, August 16, 2011

Aug 16, 2011

I am scared to death!

I have been on pain killers for over a year now because the psoriatic arthritis causes me horrible chronic pain.

My doctor sent me to the Arizona Pain Center. They are planning to do something called a radiofrequency ablation. It's basically going into my spine with a needle and frying the nerves that cause my chronic arthritis pain. Before they can do the radiofrequency ablation they have to do TWO test runs. It's basically the same thing (needle in the back, burning nerves) but it's suppose to just show the doctors what areas the radiofrequency ablation will work on. The pain will only cease for about 5 hours with the first two tests but the actual ablation has a chance to take the pain away for 6 months - 3 years. Depends on the person. If all goes well and it works then after the first two tests run I will schedule the actual surgery. It is outpatient surgery, but it is surgery cause they have to put me in a twilight sleep. The actual surgery should take a good chunk of the pain away after just 2 weeks and then after 4 weeks it will reach its maximum potential. It will then take me 4 more weeks to wean off the pain killers.

I'm really scared because the nurses and the doctor that i spoke with said that this procedure is really painful. I have to do it 3 times. Burning the nerves in my spine... gosh, it does not sound pleasant at all.

I am however going to do it and I'm really excited about it. I HATE being dependant on pain medicine every day. If this works..... gosh it would be a complete miracle!

I will be fasting before the surgery and praying constantly. If anyone is reading this blog I would appreciate some prayers sent my way.

Wish me luck! I'll update the blog with how it goes as soon as I'm up to it.

Sunday, August 14, 2011

Aug 14, 2011

Up again tonight....another chemo day.

The title of this blog is "Life is never easy, but it is worth it." It's one of my favorite quotes and I have it featured on a picture of Christ holding his hands out to his sides showing the wounds in his hands. It is such a touching picture. Whenever I think things are difficult I think of how much Christ suffered for me....for all of us and it truly puts things into perspective.

I was at my kids preschool the other day volunteering in the classroom and I just felt like I was living the dream. I have had many dreams in my life but the one that ALWAYS held true and strong was to be a mom. I love being a mom. Getting up in the morning and packing their backpacks, getting them dressed, doing my girls hair, feeding them breakfast. Now I have gotten to add to my dream by taking them to school, doing parent/teacher conferences, and this past thursday I got to volunteer in Emma's classroom. It was just perfect! The days that they don't have school we love to sit in the front room doing puzzles, matching games, board games, and now homework! I am living my dream. I have this sickness that I have to deal with....it's not fun, but I am so blessed! If I can focus on that and see all the blessings that have come into my life because of this illness, and all I have learned...then I can see that it is truly worth it! I hope that anyone reading this can realize the own blessings in their lives.

Tuesday, August 9, 2011

Aug 10, 2011

My son Michael and his little sister (emma) started pre-school a week or two ago. I went and dropped Emma off and her classmates were thrilled to see her and she jumped right in happy to be there. She is the life of the party and so friendly and social. Then there is Michael who is so shy and a bit awkward. I love his corky little things he does but he can be a bit odd and when he is uncomfortable or nervous he acts out a bit. Pretends to be a panther or growls....things like that.
The last couple of times i've taken him he seemed to be having fun but when I dropped him off today a couple of the kids said "oh no, not him again. why did he have to come." Michaels shoulders slumped over and he looked so sad. It broke my heart into a million pieces. Who knew 3 year olds could be so cruel. I had to remember they were just 3 though. I gave him a huge hug and told him I loved him and how special he was and that he needed to get in there and be friendly and show the other kids just how great he was. When I picked him up he seemed happy so hopefully all is ok.

I know i worry far too much....I'm accused of that quite often by my husband. But that's what moms do right? lol

I just worry so much. All the talk of bullying that goes on in the media these days...especially the cyber bullying. It's so real and seems to be getting so bad and I worry so much for Michael with how awkward he is and how shy. I don't want him to be one of those kids that gets bullied. I wish I could protect my kids from everything bad in the world but all I can do is give them the tools to handle it and send them out there and let them know that home is a soft and safe place to land.

Aug 9, 2011

Hi again,

I'm up pretty late. It's 1:04 in the morning. I did chemo today so I'm sick and tired. Adam is great and comes home early on chemo days so I can sleep. And i do.....usually 4 hours and then I get up and cant get back to sleep so now I'm up all night with not much to do but blog. :-)

Its days like today.....giving myself that shot, filling my body with the chemo drug. Within hours I'm so sick I usually spend most of the day on the floor in the bathroom. My son comes in and asks "mommy whats wrong?" and he brings me a tissue and water and says "here mommy...this will help." It breaks my heart to see him growing up before his time because I'm so sick. Anyways...its days like today that make it hard to keep a positive attitude.

Then someone from church brings in a meal so my family will be fed even if I'm unable to make something for them. And since I'm asleep Adam is able to get one on one time with the kids that he usually wouldn't get. So I have to try and focus on the positive and remember that when i wake up in the morning I will feel tons better. Just have to wait it out and stay positive and remember how grateful i am for the service that people bestow on my family.

Thank you to everyone!

Friday, August 5, 2011

Blessings & Learning....

When I go through a trial I think about what I'm suppose to learn from the experience and I try to focus on the blessings that come with it.

Since I got sick my church has been amazing! Everyday that I do injections or have an IV treatment a family brings us a meal. They also take my kids on playdates regularly so that I can get some rest.

What I had to learn comes hand in hand with the blessings. I am very prideful and it took an enormous amount of humility for me to accept help from other people.

In the beginning, when I was starting to get sick and the tests were all being run I would have random people I hardly knew calling me and saying they felt prompted to call and see how I was doing and every time I would say "I'm fine. I'm great. Nothing is wrong at all. Thanks though." Looking back I realize how selfish that was. I denied those people so many blessings in helping me.

I still have trouble in some areas. People offer to come and clean my house and I have not allowed anyone to come and do that but I let them take my kids for short periods and I let them make me and my family meals. I'm still working on being more humble and accepting help but I am getting much better.

Choosing your attitude.....

When it comes to being sick and having 3 little kids it can be easy to get discouraged. When my kids want so badly to play with me and I'm too sick to get my head out of the toilet or to get out of bed. I use to take them to the zoo and the museum and all sorts of other fun things and now I just don't have the strength or energy. Seeing the look on their faces when I they ask me to do something and I have to say "mommy can't today" it is heartbreaking.

As I said...it can be discouraging. When I dwell on it I could easily become depressed and overwhelmed. I CHOOSE NOT TO! I am choosing my attitude. I am choosing to find the silver lining and be positive. Somedays I have to remind myself but I will keep reminding myself because my kids, my husband and I need that.

Choosing to be positive does not mean that I don't take my moments to lock myself in a bathroom and cry for 5 minutes or scream into a pillow...cause I do all that. Sometimes I even do it on a daily basis. But I take my 5 minutes and then I get up and put a smile on my face.

Health...



Part of me wanting to share my experiences is because of some health problems that I have had to deal with this past year.




About a month after i gave birth to my daughter Hailey I started noticing that I was having a lot of pain when I tried to get up off the floor from playing with my kids. It was painful to lift my kids up and carry them, to walk up and down the stairs etc. I had a difficult time getting out of bed cause of the pain. The fatigue was getting to me as well. I was so tired all the time. I could get as much sleep as I could possibly want or need and still wake up and feel like I had not slept in days. I had zero muscle strength. I knew something was wrong and the pain was getting to be too much to handle.




I went to the doctor....the doctor told me that I was fine and that I just had too many kids too quickly and I was just experiencing depression. I didn't believe it. I KNEW something was wrong with me and no one was listening. I went through 6 doctors and FINALLY found one that listened and drew blood for the first time after nearly 6 months of trying to get a doctor to pay attention. Unfortunately the only thing that came back on my blood work was that I had low white cell count. It's a sign of cancer and with my other symptoms that was what my doctor thought he was looking for. For months and months they did tests and found NOTHING. I was getting really discouraged and the symptoms were just getting worse.




My friend told me about her friend who was experiencing something similar and it was discovered that she had melanoma cancer (which is hard to find) so I went to the dermatologist. They actually did find some cancer but it was small and they removed it all and it was not what was causing my problems. However, it was a huge blessing that it was found cause had it progressed and I would have had full blown cancer. The dermatologist suggested I see a rumatologist regarding arthritis. I was desperate and made an appointment. They ran XRAYs, MRIs, blood work, DEXA scans, etc




FINALLY an answer came! In the MRI they found that nearly every muscle in my body was covered with erosion. The erosion were eating away at my muscle and if it continued I would eventually be without any muscle and basically be paralyzed. It's called PSORIATIC ARTHRITIS. It goes hand in hand with a skin disorder called psoriasis (which I have had since I was a little girl).




Because it took so long to find what was wrong with me my case of this disease was pretty far along and I had to do some extensive treatments.




Currently I am doing a chemo injection shot called Methotrexate once a week and every 8 weeks I do a 3 hour IV treatment called Remicade. Along with these meds I am taking numerous amounts of others. My husband laughs at me when he sees me filling my pill case cause I have so many pills I can hardly close to tops.




The bad news I got recently was that this disease is something that has no cure. I will have to do chemo once a week and IV treatments every 8 weeks indefinitely....or until they find a new treatment or cure. For a year or two I will be doing harsh treatments that make me fairly ill and then they will bring the dose down to more of a maintaining basis.




So that's the health situation....

Thursday, August 4, 2011

Family....


Hi! My name is Sarah. I'm starting this blog as somewhat of a journal or therapeutic/creative outlet. Hopefully along the way I will be able to help someone else going through similar experiences to mine and share what I have learned along the route. My other motivation is to show mothers and wives that its ok to be normal. It's ok to want to curl up in a ball and cry once in awhile and it's ok not to be perfect.

I'll start with my family. I have the best job in the world! I'm a mom of 3 beautiful children. I am a bit ambitious and well....i just kept getting pregnant. haha.

I got engaged when I was 19years old. Married when I was 20 years old. Pregnant with my son Michael at 21 years old. Gave birth at 22 years old. Pregnant with my daughter Emma at 23 years old. Gave birth to her and got pregnant again with my daughter Hailey at 24 and now here I am at 25 years old with 3 kids under the age of 4.

Anyone with kids (especially kids this close together in age) can understand that this is the most rewarding and wonderful job in the world while also being the most insanely stressful and frustrating job. But even on my worse days....i would never trade one second! Well...I might trade that horrible tantrum my daughter threw this morning. haha.