Half Marathon Complete!

I am sitting at my kitchen table feeling sore, tired and extremely satisfied.  I can now say that I have ran a half marathon.  To be able to say that after having three babies and battling two auto immune diseases makes this accomplishment mean even more to me.  There were times that I thought that this was never going to happen for me.  That this was going to be one of the goals on my bucket list that I would have to just let go.  I started in January at 0.  Probably below 0 because when you have terrible joint pain you don't want to even move!  In January, I slowly began doing the Couch to 5K running program.  I kept my pace slow and eased myself into running.  I was able to complete my goal of running a 5k in April.  I think that after that 5k I began to hope.  Hope that I would be healthy enough to try and train for a half marathon.  My sister in law, Emily, was training for a marathon and it was inspirational to see her go through her training.  I was able to run with her the last 4-6 miles of her long training runs.  I think that being able to run with her and move past just the 3 miles really gave me the confidence to go ahead and train for the half marathon.  The training was difficult at times.  I dealt with blisters, sore muscles and a foot injury like all runners have to deal with but I also had to keep my special health needs in mind.  I had 10 different medications and excess fatigue to take into account.  When I look back on the training I think that over all it was a great experience.  There were hard and painful runs but there were good and easy runs that brought tears to my eyes because I couldn't believe that I was actually doing it!

The week before the race brought its own excitement.  First, I realized that while I thought that I had registered for the race somehow I hadn't.  I don't know if I started the online registration process and got distracted and never finished or if I just didn't complete the whole process and thought that I had.  Either way, I realized that I was not registered!  Thankfully there were still openings and I was able to get in no problem.  Second, my house was hit with a terrible stomach bug.  I know that there were people praying over me and to be honest I think that is the only reason that I did not get it myself.  I had cleaned up so much vomit and poop that no matter how often I washed my hands I probably should have gotten sick.  I think that it was truly an act of God that I did not come down with the stomach bug.  We had all planned to go to Des Moines as a family to watch me race.  It came down to a wait and see.  Saturday morning we had officially been 24+ hours free of vomiting and everyone felt at least well enough to go.  Yay!

Here we are race day morning.  I was so glad that Dan was able to be there to see me run.  After he caught the stomach bug too I was worried that he wouldn't be able to be there.  He felt a solid 75% and toughed out the rest.  What a guy!

Emily and I all ready to go.  Let's do this!



The beginning of the race was awesome.  To be there with that many people (8,000) all with a similar goal in mind was a moving experience.  I got choked up a couple of times as the race was beginning.  It felt a little surreal to finally be there.  We were able to meet up with my other two best friends Stacie and Jennifer.  They were running too!  We gave hugs and wished each other good luck.  To be able to be apart of this together was special and something that I will never forget.

The race went well!  I feel like I was prepared for it and it was a fun run.   There were bands all along the race path, plenty of bathrooms and drink stations.  I think that made this first run all the easier.  I got emotional a couple of times during the race.  The first time was when we passed my parents, brother, Dan and the kids.  They were all there waiting and cheering us on. 

Here we are passing them the first time.  I was so excited to see them!



Everyone hanging out waiting for us to pass them again.  When I passed them a second time I got hugs from all of the kids.  It was perfect.

Another moving moment for me during the race was when Jennifer passed us going the opposite direction.  I was able to yell her name and cheer for her.  I was so proud of how she was kicking butt.  After last April when she got injured and wasn't able to complete her first half marathon it was beautiful to see her doing so well.  

We got towards the end of the half and by that time some of the Kenyan marathoners were passing us.  It was AMAZING to see them go.  I was so inspired at their hard work and God given talent!  When I reached mile 11 I realized that I was going to actually finish!  I was so excited and it made the last two miles fly by.  My friend Stacie found us at mile 12 and was so encouraging that last bit.  She is such a cheerleader.  It is one of the things that I love the most about her!  With Stacie's encouragement and the fact that Emily and I were going to cross that finish line together we made it.  I was crying my eyes out as they said our names one right after the other.  Dan, my brother Bryan and the kids were all there at the finish clapping and cheering.  It was a perfect end to the journey.

Facing my Lupus fears

I have been struggling these last few days with some fears that I have about my Lupus.  It was really brought on when I was at a PTA meeting this week.  I had gone to the meeting to help plan Dawson's fall party.  I was introduced to two other moms by Dawson's teacher and we all sat down together to plan the party.  About ten minutes into the meeting I go to use one of the mom's names and in a panic I realize that I have no idea what it is.  I know that she told me and I even repeated the name back but I have a complete blank.  Thankfully I made a note at the bottom of my paper the names of the two women!  We got everything all planned out and as I am leaving another mom from the class catches me, introduces herself and tells me that she was at a different party planning and that is why she couldn't be at ours.  She tells me that she would still like to help and if there is anything that I need to just let her know. I have her write down all her information for me because once again I begin to panic.  I can't remember her name!  She just told me and I repeated it back!

I am freaking out on the way home because I start thinking of all the times that I can't remember.  Dan will tell me things and I have no recollection of him saying it to me.  I have had people request to be my friend on facebook and I have no idea who they are.  I know that I went to high school with them.  I know that people I do remember are friends with them but I've got nothing.  There are parts of my childhood that my siblings will talk about that I don't remember at all.  Dan will talk about our college years and early marriage and many times I don't remember what he is talking about.  It scares me.

I was sharing all these fears and worries with my friend Jennifer and she said something to me that really stuck out.  She said, "Really Heather, what is it that you are afraid of?  You are scared but what it is exactly you are afraid of?  You need to face these fears head on."  She is right!  When I face these fears head on and actually list them out loud then I can deal with them.  I think that for a long time I have not even addressed these fears because if I said them out loud it would make them true.  So here they are ...

1.  I am afraid that I am going to forget something  with the kids' schedule and they will be disappointed in me.

2.  I am afraid that I am going to forget something and let someone down like my family, my friends and people that the kids are in contact with at school.

3.  I am afraid that I will continue to forget things from my past.  Unless it produced a strong emotion in me I don't remember much from my childhood and teen/college years. 

4.  I am afraid that I won't remember these years when the kids are little.  That I will forget how Dawson went through a stage when he was two where he said Harry Potter in an English accent, or how Aubrey uses words and phrases to no 2 year old usually uses (like "that's amazing" or "that's perfect"), or ALL the crazy things Emma has done since she was born.  I don't want to forget!

5.  I am afraid of what I will be like 10, 20 or 30 years down the road.  If I can't remember where I put my keys now at 32 and spend 5 minutes looking for them only to realized that they were right next to me the whole time what  is my life going to be like when I'm 62?!?

So there they are.  In black and white.  As I look at them and speak them out loud I can already see that some of these fears are unrealistic.  I can let go of number 1 and 2 because even if I didn't have Lupus or wasn't on a chemo medication I am human and have three kids.  It will happen that I forget something.  Those fears I can let go because I know it is just life.

Fears 3 and 4, to me, are valid fears that I can address.    I think that by blogging or keeping a journal I can begin to keep those memories.  If I blog more about my day to day with the kids I can preserve those beautiful, small moments that occur with my children instead of just the big things that happen.  If I  journal my memories that I still have from my childhood I can keep those and have them to pass on to my children and grandchildren.  Memories are a gift and I want to be able to give those memories to my kids and then to their kids. 

Fear number 5, being afraid of what I will be like in the future, is a fear where the resolution seems elusive to me.  I have no control over this fear.  So, in this situation, I do the only thing that I can do.  I turn this fear over to God.  He has multiple promises that I know I can trust in.

"Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you." Deuteronomy 31:6

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?" Matt 6:25-27

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."  Phil 4:6-7

Facing my fears about my memories has been scary and even painful.  I am thankful that I listened to my friend and faced them.  Allowed myself to feel those fears because I have now been able to work through them.  To let go of those that are unrealistic, to form a plan to help me preserve the memories that I do have and to turn over the fears that I can't control.  I am allowing God to give me a peace the transcends all understanding  because I KNOW God holds me in His hand. 

Running with Auto Immune Disease

“I run because it’s so symbolic of life. You have to drive yourself to overcome the obstacles. You might feel that you can’t. But then you find your inner strength, and realize you’re capable of so much more than you thought.” – Arthur Blank

I have been bitten by the running bug.  I think that it is pretty official that I am now a runner.  I never thought that I would be able to say that.  I was talking with a runner friend of mine, Becky, this past weekend and as we were talking a number of things she said have just stuck with me.  I have been chewing on her words and really reflecting about myself. 

We had began talking about how I had been bitten by the running bug and she mentioned how awesome it is when people, for whatever reason, begin running and it become such an important part of their lives.  I immediately agreed.  Something that started, for me, as just trying to get back into decent shape has turned into more than a hobby.  Running is apart of me.  I analyzed myself a bit and I believe that I have taken running, grabbing onto it because it is a small way for me to take back control over my heath.  Much of my health life is out of my control.  I never know when I will have another Lupus or Crohn's flare.  I never know, with my repressed immune system, when a small injury will turn into a bad infection or a cold into a terrible upper respiratory infection.  I have minimal control over these health issues.  Lately, however, I have felt strong.  Healthy.  Hopeful.  Running has given me back those things that I had lost along the way these past 11 years.

I am not a fast runner.  I am actually rather slow.  I am okay with that though!  I probably will never run faster than a 10 minute mile.  That just sounded like I actually run a 10 minute mile.  I don't, by quite a bit.  I will never say never but I just don't think that running fast is in the cards for me.  Accepting this has been a process.  While now I am okay with my turtle pace I have often been sensitive about how slow I was compared to my other runner friends.  It took a lot of self reflection for me to get that running is personal.  I am doing it for me and need to only look at myself and not others.  My pace and distance our MY goals.  What is that saying?  Comparison is the thief of joy.  Truth that I need to remember.

While I was talking to Becky I mentioned how there really is no information out there about someone like me running or any type of regular exercise.  Most information is vague and the message boards are generally filled with people who are flaring and can't even imagine walking around the block.  Everything that I am doing for my training is trial and error.  I told Becky that I had been keeping a journal about my training.  I wanted to be able to look back on my journey to this half marathon.  She encouraged me to maybe blog about it.  That maybe there are others out there like me looking for information and encouragement.  I have been thinking about this a lot.  I think that I will begin blogging about my running.  Not only would it give others a better understanding of my journey but it is possible that there is another 30-something mom with auto immune issues out there looking for some encouragement or at least wants to see what someone else has done.  The reality is that I don't just go out and run.  I have a running schedule that is firmly in place due to my medications.   I can't just run on a Tuesday instead of a Monday.  I take my chemo medication on Monday night so I am shot all day Tuesday.  I have to do a long run either on a Sunday or a Monday because of the chemo.  My body is too tired to bust out 9, 10 or 11 miles until a lot of the chemo has worked out of my body.  I have to have a day of rest in between each run or work out.  I need to stay hydrated more than other runners.  The amount of medication in my body and how easily I tire means that I need to be eating well and drinking properly.  Eating and drinking well are both issues that all runners are mindful of but I especially need to be. 

All that being said, I can no longer imagine my life with out running.  It is apart of who I am now and I am so grateful.  Being able to run is a gift and I am not going to waste it.

 

My Lupus Life

I have lived with my Lupus diagnosis for over a year now and I have learned quite a bit about myself along the way.  My newest revelation has come over the past few weeks.  It was brought about by the choice I made to run a half marathon.  I began running in January and used the couch to 5k program to get myself back into shape.  I have now ran a few 5k's and wanted to make that leap and fulfill a goal that I have wanted for sometime now, the half marathon. 

As I talked to other people about it I noticed how often I said that I wanted to run now while I can or how running has become such a part of my life that I would be heartbroken when I have to quit.  It's these types of statements that were coming out of my mouth that caused me to pause and reflect.  When had I become such a glass is half empty type of person?  Somewhere along my journey of health and life I have come to just expect that at any moment the other shoe is going to drop.  At any time my health will take a drastic down turn and I will be back to barely being able to walk or lift my children up.  The shock of my Lupus diagnosis has stuck my brain in a pattern of thinking that I do not want for myself.  I do not want to always be waiting for the flare to hit me. 

I need to realize and remember that it is not likely that I will ever get that bad again.  We know what is wrong with me and when I feel a flare coming on we can take care of it quickly.  It is just like my Crohn's disease.  I will never get as bad as I was that first time 10+ years ago.  I know what to do!  I know in my heart that living this life in fear of the next flare is NOT how God wants me to live.  In 1 Peter it talks about casting all your fears on God because He cares for us.  Then, in Colossians I am remind how I can do all thing through Christ who gives me strength.  I believe that God knows my fears related to my health and I believe these last few weeks He has been nudging me to let them go.  To cast them at His feet and leave them there.  Not to pick them back up tomorrow or later this evening (if we are being real here.)  I believe that God is telling me that, yes, I will have flares but, no, it is not the end of my hopes and dreams for myself.  He will give me strength to survive each flare and come back each time.  My life is NOT over and I WILL stop talking like it is. 

'Therefore, since we have so great a cloud of witnesses surrounding us, let us lay aside every encumbrance and the sin that so easily entangles us, and let us run with endurance the race that is set before us, fixing our eyes on Jesus, the author and perfecter of faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God." Hebrews 12:1-2

Constant Vigilance

Well, this week I slacked off somehow and caught the worst cold!  Dawson had it first and I must not have washed my hands enough because BAM it hit me hard.  I think that since I have been feeling well in the Lupus and Crohn's department I have not been as vigilant about germs.  My immune system is so repressed though that I had a terrible time fighting off the cold and it turned into a Upper Respiratory Infection quickly.  I will be doing my best to make sure that will NOT be happening again! 

I found this great all purpose cleaner recipe that I can use around the house as a disinfectant. 

2 teaspoon borax
4 tablespoons vinegar or lemon juice
1 teaspoon washing soda
1 teaspoon dish soap
4 cups hot water
Combine all the ingredients into a 32oz. spray bottle.  Shake it up and use it anywhere!


It's strong enough to wipe out germs and viruses. I can use it daily on light switches, door and toliet handles, especially when someone in the house is sick. I am on antibiotics and steroids which have helped a lot but that cough is still hanging around.   So, I am back to wiping down shopping carts and having a never ending supply of hand sanitizer with me at all times.  Constant Vigilance! (Do you like how I threw in the Harry Potter reference?  I just couldn't resist!)

Lupus and Mumford and Sons = Running Motivation

Today I ran my first long run.  I have been working out slowly and doing the Couch to 5k running program.  I have felt myself getting stronger and my endurance increasing.  I work out three times a week, trying for Monday, Wednesday, and Fridays.  I need to make sure that I have at lease one day of rest between workouts or I am too tired.  I also often take naps on the days that I work out to help me last until bed time.  I am enjoying the time to myself at the gym and Aubrey I think has just as much fun playing in the childcare.  After we drop Emma off at school Aubrey will always ask me, "Mom!  Gym?"  It is so cute.

I was pleasantly surprised today how well my long run went.  I ran for 20 minutes non stop (which for me is a little over 1.5 miles).  It felt good and when I was getting towards the end where I was beginning to tire a thought popped into my head.  It was such a motivational thought that it completely carried me through to the end. 

I have Lupus.  This time last year I could barely walk at the end of the day, hold Aubrey or just function as a wife and mother.  It is a privilege to run.  It is a privilege to be able to run and I am going to quit being a baby and run!  And I will continue to run until Lupus hits me again.  When that happens I will recover, again, and I will start all over.  God has given me the ability to run and I will!

This thought coupled with this song by the Mumford and Sons took me to the end of the run.  I was so inspired that I probably could have kept running but I did not want to over do it:)

Tonight I am grateful

for my medications

my doctors

for gym daycare

for a husband that is so encouraging

for my new mp3 player

for Mumford and Sons music

for my increasing strength

that I can run

and for a God that saw fit to give all of those things to me



Healthy Report for the Holidays

I had an appointment with my Gastrologist today and it went really well.  All my blood work has looked good the last few draws and I have not had any flare symptoms for quiet some time.  This is all wonderful news.  We will continue the treatment plan that we have right now, Remicade every eight weeks and 2000 mg of Pentasa everyday.  The best news of the appointment was that he does not need to see me for another six months and I do not need to have a colonoscopy in January.  I have had colonoscopies every January for the last 3-4 years.  It will be nice to not start the year off with Moviprep!

I have also had an appointment with my Rheumatologist.  She had upped my medication because I was still having some joint pain and swelling.  The dosage seems to have done the job and I would say that at this time between the 400mg of Plaquenil and the 25mg of Methotrexate the Lupus seems quiet.  I am feeling more myself then I have since January.  I still tire pretty easily but it is something that I can generally push through if I need to or nap off if I have the time.  After months of inactivity I am looking forward to joining a gym and slowly getting myself back into shape.  I will probably never be able to be the runner that I always wanted but I think that biking and the elliptical will help me reach my fitness goals. 

A few months back I had an eye appointment and they had found some discoloration on my eye that they thought might have been a result of my Plaquenil.  This last month I got more in depth testing done and it turns out that the scarring is not from my medication.  It most likely occurred sometime in my childhood and since it is not effecting my eye sight they are not concerned about it at this time.  They will continue to monitor it although he did not expect to see any changes over time. 

I feel grateful as we head into Christmas and the New Year for this healthy report.  This year has been especially difficult for our family with all my health issues.  When you have a chronic illness each day that you feel well is a gift and you learn to not take it for granted.  I feel that through the Lupus diagnosis I have learned so much about myself.  I had many ideas of what it meant to be a wife, mother and even a follower of Jesus.  God has taught me a lot and I believe that I can look back at this past year and truly feel James 1:2-4, "Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance.  And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing."  God used this time to do some great work in me.  I believe that I have become a better mother to my children by letting go of unrealistic ideas that I was clinging to.  Also, I feel more...I am not sure if I can explain it very well as I am not that eloquent but I will try.  Dan has always been my best friend ever since we met when I was 17 year old.  However, these last few years as we have had children, jobs getting cut back and then added (and back and forth you know the railroad life), suffered a miscarriage, and my numerous health issues, I feel that we are more than just a husband and wife.  God has really been with us this year and I am thankful that in these struggles that we have faced we did not fall apart but we came closer together.

I know that sometime in the future I will get ill again.  It is just apart of the life when you have a chronic illness (or if you are a complete fixer-upper and have two) but I am so thankful for today.  I feel a solid 90% and I will take that with a smile!

Lupie Lady Update

In the last few weeks I have had a Rheumatologist appointment and an eye doctor appointment that I wanted to update on.  At my Rheumatologist appointment I talked with my doctor about my joints acting up as my Remicade began to wear off.  There were a good 3-4 weeks out of the 8 week treatment schedule that my joints would start acting up.  I would begin to have swelling and pain in my hands and feet.  It was nothing compared to before but I felt like it was still interfering with my day to day life.  She suggested that I up my chemo drug to 20mg.  I had expected this and so it wasn't a huge surprise to me.  A few weeks have gone by and I am happy to report that it seems to be an effective dosage for me.  It has really helped as my Remicade has begun to wear off.  My body is still getting used to the new dosage though.  I am more fatigued but I think that the next month or so I should be more used to it and will not be so tired all the time. 

I had my eye doctor appointment today.  It has been years since I have been in and I needed to get a check up because a medication that I take, Plaquenil, can affect your eyes.  In rare cases it can cause damage to your retina.  It is recommended to see your eye doctor once a year to monitor your eyes.  Today at my appointment my doctor noticed some spots near my retina that were some cause for concern.  Those spots right now are not affecting my eye sight but he wants to do a few more indepth tests to see for sure what is going on.  I will be going back in two weeks for those tests and at that time we will know more.  The doctor plans on being in contact with my Rheumatologist through the whole process.  

I really feel grateful this afternoon for the care that I have received with each doctor I go to.  I know that there are plenty of people out there that have a hard time finding the right doctor that fits their needs.  God has seemed to really provide for me in this area. 

On a non-medical note, I am beginning to adjust to the life of saying no and not feeling like I need to do everything for everyone all the time.  It has been a hard adjustment for me and I still often feel guilty that I am not "doing" more or when I have to say no about something.  However, I firmly believe that I am making the right choices for myself and my family.  I am thankful for the energy that I have to take care of my family.  You would be surprised (or maybe not) at how much energy it takes to raise three kiddos.  God seems to give me just enough to make it through the tough days and some days I even have extra for myself.  On those days I have extra I have spent time pursuing my new hobby, sewing!  These last weeks I have been meditating on this verse and I feel as though our life is a living testament to this promise in Philippians 4:19, "And my God will meet all your needs according to the riches of his glory in Christ Jesus. "  God has provided for Dan and I through out all my health issues and I want to be sure to give all of my praise to Him.  It is a comfort to know that I am in His hands and even though times can get rough He will always provide. 

It's more than a meal

Another MOPS (Mother of Preschooler) mom brought me by a meal this afternoon.  This is meal number 5 that has been given to our family.  I wish that when I say thank you to those ladies that they could hear what I was thinking at that moment.  That they could truly understand that they are giving me more then just a meal to feed my family.  They have given me the time to bake cupcakes with Dawson and Emma.  I was able to make Aubrey's birthday cake just like I had done for Dawson and Emma years before.  I was able to spend time with my sister, niece and nephew and to take the kids on a picnic to the park.  These are all things that, realistically, I could not have done if I was intending to make something other then sandwiches for dinner.  I only have so much energy/feeling good time in the day and I am beginning to understand that my day is filled with choices.  Do I clean the house or take the kids to the pool?  Do I make a good dinner or do I the laundry?  I used to be able to clean the house, take the kids to the pool, make a yummy dinner and then after the kids were in bed I could fold all the laundry.  I could have done all of that in one day and not batted an eye.  Now, I can only do one of those things.  I am so grateful to have a group of moms who love me and my family enough to take matters into their own hands (knowing how hard it is for me to ask for help) and set up a meal train.  Thank you my friends for giving my family a good meal to eat and thank you for giving me the ability to make some extra choices in a day.  God has been so good to me by bringing such dear people into my life.  I thank my God every time that I think of you.

Weekend Fun

We had a fun and busy weekend.  I started the weekend off with a bang at the Rheumatologist office.  I had a follow up appointment with my doctor to see how the methotrexate was helping.  Thankfully it has helped me a great deal without very many side effects.  I was thankful to have Dan go with me to my appointment.  He was able to meet Dr Doud for the first time and ask her some questions that he had.  We talked about my fatigue and she felt that with as tired as I have been feeling it was more of a sign that I was still in a flare then a side effect of the methotrexate.  She prescribed me a medication called Plaquenil that I will take twice a day.  She wanted to try this to see if it will help with my fatigue.  This is a relatively safe drug (in the scheme of things it is nothing compared to the other meds I am on) and she would prefer to try this in addition to the methotrexate then to have to increase my methotrexate dosage.  Dan and I had laughed on our way home how easily I took the new medication news.  I mean really, what's one more?

Friday afternoon the kids and I loaded up the van and left for Ankeny to visit my brother and sister in law.  My brother was having a surprise graduation party on Saturday.  After lots of hard work he is graduating from college.  When we got to town we stopped by Emily's salon and she cut Emma's hair.  I had tried to fix Emma's hair after the last hair cutting incident but it was starting to look like a mullet.  Emily was able to even it out and make it look pretty cute.  She also had a talk with Emma about how Auntie would be more then happy to cut her hair anytime she wanted.  She didn't need to take matters into her own hands:)  After the kids went to bed that night I got to enjoy some Emily time while Bryan "raided".  I had so much fun looking at fabric, quilting magazines and eating our favorite snack (popcorn with m&m's and Pepsi).  I wish that we didn't live so far away from each other.  Although, it does make me cherish the time we do have together all the more. 

Saturday morning came and it was raining.  We ended up having to spill the beans to Bryan about the party.  We decorated the house and got all the food ready.  We had walking tacos for everyone which was new to me.  Basically you take a small bag of Doritos and crunch it up.  Then in the bag you add the taco meat, lettuce, sour cream and salsa.  Mix it together with your fork and...there you have it, a walking taco.  Dawson had convinced some of the guys at the party to join in a game of baseball.  He had a blast playing baseball with Uncle Bryan and all of his buddies.  That night at bed time Dawson thanked God for having such a fun time playing baseball with the guys.  It was sweet.  As a graduation present Emily had Dan make a Huskers bags set.  The kids actually helped Dan build and paint it.  We pulled them out at the graduation party and had fun trying it out.  FYI, Dawson is way better at bags then I am:)

Aubrey watching everyone playing games.

Bryan and Dad in the middle of a heated game.

Emma giving Papa a high-five

Emma painting.  Do you notice that Dan had her paint the inside:)

She was so proud of her work.



Hard conversations

I had a hard conversation the other day with Dawson and it has taken me a few days to really process it.  I was in my bathroom getting ready for the day and Dawson had come in to chat with me.  I was all set to take my morning pills and had them laying out on the counter.  Dawson, always the one to ask why, wanted me to tell him about each pill and why I had to take it.  Now, I have a firm belief that if appropriate I will always do my best to answer whatever questions my kiddos want to ask me.  I started laying out all the pills that I take in one day (which if you are wondering it is 11 pills and 17 pills every Monday).  I explained about the ones that I take for my Crohn's disease.  How I often have a hurt tummy and these help me.  I explained that I also had to go in every two months to get a special medicine that they can only give me at the doctor office.  He wanted to know all about what an iv was and why it took so long for me to take the medicine.  I showed him the vitamins that I have to take because I don't absorb all the nutrients from the food that I eat.  Then I showed him my Lupus pills.  I hadn't really sat down and talked to the kids about my Lupus diagnosis yet.  Dawson knew that I was hurting a lot in my joints and that I am pretty tired most of the time but I have never really talked to him about what Lupus was.  I think that it was hard to explain it to him not because he didn't understand what I was saying but that I actually had to say it out loud.  It meant that it was really real.  When he looked at me with his big blue eyes and asked me when my Lupus was going to get better I almost started to cry.  I had to explain that it wasn't like the flu that would go away after a few days.  I had to say to my son that I would always have Lupus and that I would always have Crohn's disease.  I would not get "better".  At this moment I see Dawson's personality shine though.  I can see the sorrow in his eyes.  He is looking at me and I can see that he hurts for me.  I think that truth was just as hard for Dawson to hear as it was for me to say.  We finally get to the last pill and when he asks what it is I have to chuckle.  It is my birth control pill.  So in true form I answer as honestly as I can:)  I tell him that pill keeps mommy from having any more babies.  Again, he looks at me with this face that is so sad.  He says to me, "Mommy why don't you want to have anymore babies?  I love having Aubrey with us."  Once again I almost begin to cry.  My sweet boy would love to be the big brother to as many babies as we would be able to give him.  I tell him that the medicine that I take for my Lupus could make a baby very sick so I am not supposed to have anymore babies.  He looks at me for a minute.  You can see the wheels turning and then he suddenly changes the subject and launches into some Star Wars story.  He eventually leaves and as I am finishing straightening my hair I think about all the things that I didn't tell him.  The things that I am trying to work through but are keeping me up at night when Dan is away working.  I am afraid.  I am afraid that I have genetically passed on these auto immune disorders to my children.  It would be absolutely devastating to me if any of the kids were to ever be diagnosed.  I now have two, two auto immune disorders.  When I am being honest with myself...if I would have had two diseases before Dan and I decided to have children...I don't know that I would have had kids.  As I was unloading this burden to dear friend Emily she shared a powerful truth with me that I have been doing my best to remember.  She said, "Well, that is probably why this happened now instead of sooner.  God had a plan."  It is true!  He does have a plan.  I have no idea what that plan is but I know that He has one for me AND He has one for each of my children.  I can't imagine what my life would be like with out Dawson, Emma and Aubrey.  They are such a beautiful gift and I am so grateful that God gave them to me. 

I am doing my best to work through our new reality.  I think that it has been an adjustment not only for myself but also for Dan and the kids.  I am sure that as time goes by we will have many more hard conversations related to my illnesses.  I posted this great quote from CS Lewis awhile back in my bathroom.  It is a great reminder to me.

"We must stop regarding the unexpected or unpleasant things as interruptions of real life.  The truth is that interruptions ARE real life."

Lab Tests Came Back

My test results have come back. My RF and CCP lab tests were both negative. Based on these results Dr Doud believes that I do not have Rheumatoid Arthritis. She said that she was very surprised because she thought for sure based on my symptoms that it would come back that I have RA. She said, "Well, it's a good thing we do labs and don't just go off of my own initial perception."  However, the lab ran another test called an ANA and it was positive.  Based on the fact that the other two labs are negative and this one is positive she thinks that actually I have Lupus.

Now, it is possible that I have a drug-induced Lupus. Remicade, the medicine that I am on for Crohn's disease, can do that. The action would be to get off of Remicade and my symptoms would eventually go away. Or, I really do have Lupus which is possible because once you have one auto-immune disorder you often get others. However, there is no way to know for sure which one it is unless I go off Remicade. Dr Doud has upped my prednisone and I am supposed to call her on Tuesday to see how I feel. She may put me on methotrexate still (as it is also used to treat Lupus).

I called my GI today and spoke to his nurse about all of this. Dr Doud is hesitant to take me off Remicade because it has been working so well for my Crohn's. I want to talk to Dr Pearson about my other options after Remicade. I am also going to see if they (Dr Doud and Dr Pearson) can talk and feel each other out for a good game plan.

They way that it stands now I could go off Remicade to see if my Lupus stuff goes away. If it does great but I still will just have to deal with my Crohn's. If I go off the Remicade and I still have Lupus symptoms however I have screwed myself in the Crohn's department because once you go off Remicade it will never work as well for you again if you go back on. Or, I stay on the Remicade and we treat the Lupus with methotrexate. Then I will be taking two major drugs. I am not sure where to go from here. I am praying for wisdom for myself and the doctors. I think that if I knew what my options are after Remicade I feel like I could make a better judgement.

Thankfully the prednisone has been helpful and I am able to function a bit more during the day.  I have not had many side effects of prednisone because I am able to stay on a lower dosage.  This is a huge blessing.  I had a wonderful weekend with the family and my pain was manageable.  I am so thankful for that.

Finding Truth

Today has been a little rough in that Dan is gone to North Platte and I am here with the kids.  Normally this was never that big of a deal.  Sure, sometimes it was hard having him gone and being with the kids all the time but bed time was always around the corner:)  Tonight though I feel like the reality of my diagnosis has hit me.

How can I be a good wife and mother if I can't clean my house, or make meals from scratch, or bake fabulous birthday cakes or go on school field trips?  I am realizing that much...okay all my identity of what makes me a good wife to my husband and a good mother to my children is based off of these things I do.  That is being slowly stripped from me and I feel a little lost as to who I am.

I was doing some research this evening and stumbled across an article about RA and parenting.  This following paragraph was exactly the truth that I needed to hear.

"At the end of the day, being a good parent isn't about running down a hill or taking the stairs two at a time. Being a good parent is about unconditional love, patience, paying attention, talking to your children and teaching them how to become a kind, responsible human being. Becoming a role model who shows your kids that you can live with bad things and love and laugh anyway is a far better lesson than whether you can get the lid off the pickle jar. To your child, how your family works is normal and you are mommy or daddy, period. If a child has to crawl up on your lap themselves to get a hug instead of being lifted up, what's important about that moment is the hug, not how you got there."

I have some thinking that needs adjusted.  I will be honest that changing a life long idea of what it means to be someone is not going to be easy.  I think that it will take a lot of digging for God's wisdom and praying the right truths into my life.  I know that changing my thinking will be a daily (probably multiple times a day) issue that I have to address and them lay at God's feet.  I found this verse this evening at it occurred to me that this is the kind of wife and mother God wants me to be.  God doesn't care if I serve my kids frozen waffles now instead of ones made from scratch but He does care if I teach my children about mercy.  God does not care if the house is not picked up when Dan gets home from work but He does care if I show him kindness and gentleness.   So here is the first truth that I found and will be praying into my life.

"Since God chose you to be the holy people he loves, you must clothe yourselves with tenderhearted mercy, kindness, humility, gentleness, and patience."  Colossians 3:12

The Appointment

Well today was the big day.  I finally had my appointment with my Rheumatologist.  It was clear across Omaha so I had plenty of time to pray on my way.  Also, I popped in one of my favorite cd's Redemption Songs by Jars of Clay.  I was praying over the appointment and praying for peace whatever the outcome was going to be.


I met Dr Doud and I really like her.  She was very personable and I felt that she really listened to what I was trying to say to her.  This in itself was a gift from God because that was one of the things that I was afraid of.  Before I was diagnosed with Crohn's I went to several doctors who didn't listen to what I was trying to say and just wrote me off as being anorexic, having just a nervous stomach and that it was mostly in my head.  She asked me a lot of questions trying to see if my joint issues were more Crohn's related or if it was something more. 


Dr Doud believes that based on my symptoms that I am showing signs of Rheumatoid Arthritis.  I went to get some blood work done and then to get x-rays of my hands and feet.  The blood work is to check several things but also to look at what my Rheumatoid Factor is.  The RF number is just an antibody that floats around in the blood of many people who do in fact have Rheumatoid Arthritis.  Doctors use the RF test in blood work because the values of RF is often quite higher in people who do have RA.  RF supports a tentative diagnoses of RA...but used alone, is not enough to make a diagnoses of RA.  Normal values are usually 0-20 U/mL give or take a few depending on the lab (all labs have a tendency to vary a point or 2).  Now Dr Doud mentioned that an absent RF does not exclude Rheumatoid Arthritis.  They'll use this test, plus my statements of symptoms, pain levels in joints, swelling, symmetrical joint pain & swelling & stiffness, RA nodules, and XRAY changes of the joint or decalcifications/deformities to make a final diagnosis.


Dr Doud will be contacting me early next week to talk to me about the results of my blood work and x-rays.  She has put me on 5mg of Prednisone to try and give me some relief.  Hopefully this dosage will be effective to help but not so high that I have a lot of side effects that go along with Prednisone.  Dr Doud said that most likely she will be putting me on a medication called Methotrexate.  It is compatible with my different Crohn's medications.  I have heard of this medication before because it is sometimes actually used to treat Crohn's disease. 


I am disappointed that I do have something in addition to my Crohn's disease.  I feel sorrow more for my family then really I do myself.  They are going to be just as effected by this as I will be.  I will just have to lay this at God's feet (maybe daily) and trust that when my body fails me that He will provide as He has promised.  God has given me wonderful friends and family that pray over me, send notes of love and encouragement or call me and flat out tell me that they are sending someone over to help me knowing how much I hate to ask.  I know that I am not alone in this and I am grateful beyond anything that I can express.  I do have to say though that when God calls me home I will not be sad to leave this broken body behind!

Philippians 3:20-21 "But our citizenship is in heaven. And we eagerly await a Savior from there, the Lord Jesus Christ, who, by the power that enables him to bring everything under his control, will transform our lowly bodies so that they will be like his glorious body."

The Bad and the Ugly

I am struggling.  I have wanted to share how I have been feeling but I was waiting for some deep revelation to come to me.  For the feeling that it will all be okay.  However, that feeling has not come. 

I am in constant pain.  My joints swell and hurt all the time.  Last night I believe that I hit some wall in my ability to keep a positive attitude and not to be overwhelmed by everything.  Dan went to bed early last night because he was going to be called in the middle of the night.  I stayed up a little while longer watching Battlestar Galactica (geeky I know) and went to feed Aubrey before I hit the hay.  Usually we feed her one more bottle before bed and then she will sleep until about 6:30 am.  I went to go pick her up out of the crib and I couldn't.  With her laying flat my hands and wrists could not take lifting her up.  I have been picking her up by putting my forearms under her armpits and lifting her that way but usually she is sitting up when I do that.  I will admit that I starting bawling.  How ridiculous is this?  I can't even pick up my own daughter.  I feel heartbroken and overwhelmed that I can no longer to all the things that I want to do.

I have an appointment with a Rheumatologist on Friday but instead of being relieved I am anxious and worried.  What if she tells me there is nothing really wrong with me?  That this is all because of my Crohn's and I have to just tough it out?  What if there really is something else wrong with me?  Crohn's disease is enough of a burden to my family but to have something else too?  Poor Dan is already carrying a big load.

I am trying to remember that God is in control and He works all things for His glory but I am just overwhelmed and tired.  So there it is.  A few weeks ago I feel like there was the good in my story.  I could see and feel God's work in me.  Now here today I feel all I have is the bad and the ugly. 

Out of the depths I have cried to You, O Lord.
Lord, hear my voice!
Let Your ears be attentive to the voice of my supplications.

Psalms 130:1-2

It's all perspective

I have to admit that the last few days have been hard for me.  I am going on week five of constant everyday joint pain and swelling.  Last night, as Dan rushed around to help me get the kids bathed and to bed before he left for his 12 hour night shift, I just felt overwhelmed.  I was frustrated that I was not able to just do it myself.  That I didn't make Dan's lunch for him.  That I just went to bed and the house was a mess because I was too tired and in too much pain to clean it up.  Basically, after the kids were in bed and Dan was gone I just sat around and threw myself the biggest pity party. 

Really in desperation I began praying that God would help me survive the days.  I told Him that I was tired and hurting and not able to do the job that I thought He had assigned to me.  Isn't this what He called me to do?  Do be a mother and a wife?  To take care of my family?  How in the world am I even supposed to do that when five nights out of seven I am limping around the house?  I was trying to cling to 2 Corinthians 12:9 which says, " 'I am all you need.  I give you My loving-favor.  My power works best in weak people.'  I am happy to be weak and have troubles so I can have Christ's power in me."  To be honest though, while I knew the truth I was just not feeling it.  I ended up just going to bed feeling defeated. 

As I was laying in bed trying (unsuccessfully) to go to sleep I believe that God gave me a thought.  It felt like He said to me, "Heather, what HAVE I given you?"  So while laying in bed I began listing all the things that God HAS given me.

1.  Three children who are healthy and clever and joyful.
2.  A wonderful husband who works a job that I know he doesn't love because it provides well for me and the kids.
3.  Union insurance!  Dan works at a job that gives us health benefits that we would not have anywhere else.  I would have to work to pay for my health care if Dan had a different job.
4.  I am able to stay at home with my children.
5.  We have a roof over our heads, food on the table and the ability to buy things that we want and not just what we need.

Really I could go on and on about all the things that God has provided for me.  I was reflecting on all those while I was driving the kids to school and it occurred to me that who am I to only expect good and to complain when troubles come along?  Didn't God tell me that in this world I will have troubles?  Didn't He then promise not to fear because He has overcome the world?  I realized at that moment that it is all perspective.  I have a choice.  I can choose to continue to wallow (yes, I am wallowing) in my pain or I can remember that this is small compared to all the blessings that God has given to me.  God can and will use me though it may not be in the way that I thought.  He is all I need and I have His loving favor.  And if His power works best in weak people...look out!  God has some great work coming my way and I will be able to give Him all the glory.