Dehydration and stress do not mix well

It has been nearly a week since I last posted but last week proved to be a stressful one.

My son decided to be a terror most of last week challenging his teacher and bith of us. Wednesday it took him nearly 3 hours to read a 45 page, level 3.1 book and pass one of our quizzes simply because he refused to actualy read the book. Instead he decided to skim it and say he read it thinking he would get away with it. Yeah, not a chance. The remainder of the week he just refused to behave and continued this throughout the weekend which got him grounded. Hoping this week will be better considering he hated watching his sisters play in the snow while he had to stay in his room.

Thiursday night my Jeep's engine decided to die on our way back from bible study. The kids and I were able to get a ride from the exit to the gas station where our neighbor picked us up but the stress through my body into a massive flare. Thankfully a friend was gracious enough to come pick up the kids for school on Friday and we were able to borrow another friend's spare car saving us on rental fees until the Jeep is fixed. My body crashed hard on Friday so I ended up sleeping nearly all day.

This weekend Josh worked on Saturday and had a rec soccer coaches meeting on Sunday along with other things he did which left mme to soloing the kids most of the weekend. I'm not mad or anything at Josh for having to solo the kids. It just left me with little rest.

All of the above is what probably led me to being severely dehydrated for IVIG despite me drinking fluids as much as possible. I was hoping to get the vein in one stick but should have known better considering how off I have felt this morning. My BP was also raised which the dehydration likely caused so having 2 bags of fluid as bookends to my IVIG is probably a much needed thing. It took 4 sticks and 2 nurses to finally get my IV started which sucked but it wasn't the nurses fault.  We managed to find a vein just below my wrist that popped u finally after disaapearing on a previous attempt.  At times it feels like my veins like to play hide and seek just to make everyone's day more interesting.

Until tomorrow or at least Wednesday since I probably need to get through the next round of parent/teacher conferences before posting.

What you see and don't see

Yeah, failing horribly on posting every day lately on what it is like to live "Life on the Fringes" as that life I speak of has gotten away from me just a tad.

The kids had yet another snow day on Friday which meant little rest for me. The weekend was crazy as Saturday it started to snow heavily. Thankfully we were ready for it and had no plans to venture out. It helped that Josh and I were working an Ingress Global Anamoly in Austin remotely with Josh as head operator and myself as one of the cluster operators. It was fun but also meant constant adjustment on my part so my joints didn't lock during the nearly five hour event. What was cool about it that our team won by quite a bit which made some of my discomfort worth it. 

Sunday we woke up to Joseph throwing up due to eating a bad Clementine we think the night before. This meant no church for us which wasn't a good thing but I used the time to get some much needed rest before heading to 3 hours of soccer training. Monday the kids made it back to school, thankfully, which allowed me to go to my hour long Actemira infusion without any tag-a-longs. Afterwards I had no choice but to crash since we were headed to a STEM (science, technology, engineering, & math) seminar at a local roller skating rink put on for the cubscouts. It was great fun watching the kids learn some new things while getting to skate for an hour while having the rink with maybe 25 other people at most. The kids were thrilled I put on some rollerblades as well to join them since it was so deserted. We figured less people meant less chance of someone running into me and since I rollerbladed all the time in college, I am fairly stable on my blades. It was really great to see the kids reactions to having them watch me skate around the rink fairly well. Yes, I can skate and do some active things instead of always having to be on the sidelines.

Unfortunately the skating is what brings me to my topic of "What you see and don't see".  What my kids saw was mommy joining in on the family fun and skating around the rink for 45 minutes or so instead of sitting on the sidelines. What they didn't see was the severe pain I was in last night due to my body not liking on the activity. I knew I wouldn't hurt myself rollerblading but also knew I would pay for it later. It is the constant give and take that shapes my decisions. In this case, seeing the kids smiles and being able to show my kids a glimpse of how active I used to be made the pain later worth it. Others might think this was a stupid move and that I should have stayed just watching. They may be right but I wanted to feel normal for just a little while and having low turn out at the scout event allowed me to feel normal.

Late last week, we had to do a typical grocery run to Giant Eagle. We parked using my blue handicap placard and I walked seemingly normal into the store. People around the truck at the time probably thought "why is she using a handicap space, she looks fine." What they didn't see was about half way around the store my knee decided to give out making walking very painful.  Fatigue also started to hit around this time so I started using the cart as a walker in order to finish what we needed to do, Josh knew I was hurting so we slowed down. By the time we checked out I could barely walk so that handicap spot proved essential to me when it was time to leave the store. 

When I drop my kids off at Calumet Christian each morning, I often times stay with them in the lobby so they don't have to stand outside in the cold. On Thurday mornings, I help in the first grade classroom as well for an hour. What people see is me with a smile on my face, walking without much of a limp and appearing totally healthy. What they don't see is how long it took me to get myself out of bed that morning and how hard it was to take those first steps due to severe stiffness or how hard it was to open a simple bottle do to weakness in my hands. After I get home from drop off or home from working the classroom, what they don't see is me crashing on the couch for the remainder of the morning because I just spent what little energy I had at the school. On good days, I come home and get a few chores done around the house but inevitably my body gives out on me and forces me to stop what I am doing and take a nap.  Yet, despite all the challenges, I enjoy being involved in the kids school and helping out in the classroom.

What people see is myself being a driver for a field trip or my family going for a short hike in the woods.  What they don't see is how much planning is involved to allow me to participate in those activities. How I have to plan ahead how much I need to rest up so I can participate with minimal negative impact to my body.  Sometimes despite all my planning, I still end up struggling to participate but sometimes it works out and God gives me the strength I need to finish out the activity with a smile on my face. 

Reading this blog people may think that all I am doing is whining about how hard my illness is and complaining about the constant pain and adjustments constantly needed. What people don't know is that I thank God every day for the things I can get accomplished that day. Sure I get frustrated and there are lots of times I don't want to have to think about living with several chronic illnesses. I vent to God and vent to my husband but ultimately come to the same conclusion each time. I don't know why God allowed me to have all these health issues but he must have some reason. I have to trust his plan for my life and just try to live each day the best I can . It is not all bad. These past 10 years I have learned how to adapt, be flexible and have more empathy for others. Still working on how to ask for help when I need it but I am trying. More importantly my illnesses have allowed me to be more understanding to my youngest's joint issues. 

Until tomorrow....

Snow days and doctors appointments

I have failed miserably in posting much lately due to a variety of factors. The weekend was incredibly busy so I barely had a chance to breathe much less think about what to post. Sunday we left the house at 8am and didn't get home till 7pm due to church, a classmates roller skating party and soccer training.

This week the weather decided to remind us how harsh it could be. Monday was a scheduled day off but we got a snow day Tuesday do to severe temps. Wednesday they had school but the roads were horrible. Our normal 15min drive turned into a 45 minute trek but at least we arrived with little issue.  Today schools were closed again due to severe temps and we are waiting on word about tomorrow considering the temp is supposed to be even lower.  Makes for a trying week, especially when the kids start to get bored and I can't let them play outside like I would during Spring Break.

Thanks to the snow day today, the kids had the joy of going to my 6 month dermatology check up with me. Usually I like to go alone to these but no such luck.  I expected it to be a fairly uneventful visit with him finding no spots.

Yeah, I was wrong. As soon as he started to look at my face, he immediately found 2 spots around my nose where I had put the chemo creme on last month that he decided to freeze off.  If you have ever had this done, you know how much this burns when the liquid hits your skin.  Thanks to the kids watching my reaction, I was unable to so much as flinch at the pain and just had to breathe through it. Not my idea of fun.

Of course those 2 spots were not the only things he found today. He also noted to spots on the right side of my forehead that he noted as possible basal cell carcinoma. I was not thrilled knowing he was going to biopsy these spots which meant two shots into the area to numb the area.  With my history of basal cell carcinoma, 8 spots removed from my face over the last 3 years, he suspects these two will turn up as basal cell as well. At least he said that I could drive myself to the Mohs surgery to have them removed since they posed no danger of making my eye swell during the procedure. I'll take whatever positive I can get out of the appointment.

On another positive note, I got several compliments on how well behaved the kids were at the appointment. What really made me smile was Joseph opening doors for the girls and ladies he saw in the building telling them "Girls first."  It was very sweet and made several of the older gentlemen around us smile as well.  We want Joseph to open doors for girls and be protective of them. Chivalry is not dead in my house.

Until tomorrow....I hope at least

Boys and Reading

This week has been a tad crazy as usual but thankfully my body has held up ok. Granted I haven't held much down the last few days for some reason but at least I was able to make it to the kids various schoo Valentine's Day parties.

Today the kids have off of school due to a teacher work day.  One of Cynthia's books was finally released so we headed to the library to pick it up and let the kids play on the computers as well as find a book.

Here is where the fun begins. The girls love to read so getting them to read has been fairly easy. Joseph likes picture books but getting him to voluntarily read a chapter book has been challenging. Josh was able to find the Mighty Robot series which he loved but has completely read through leaving us searching for another series for him to get excited about as well.  He has read book one of The Hardy Boys secret files but only sort of liked it so on goes my search.

Thankfully I was able to find a chapter book called Scooby-Doo mysteries that he seems willing to try and a Batman chapter book so we'll try these and see what he thinks. At some point he will find a chapter books more appealing, until then I will keep trying to find books he will read, even if they are not chapter books. Reading is reading.

If anyone has any suggestions, I would be open to it. He is a reluctant reader but a very good one as his reading level is 2.9 (high 2nd grade) to 4.2 (start of 4th grade).

Until tomorrow....

Life getting away from me

Wow, I haven't posted since Wednesday. Life this past week just got away from me apparently.

When I reach my pain tolerance my body completely shuts down on me.  This is what happened this past week with my shoulder pain. I was able to get the kids to school and then I would come home and crash outside some minor stuff around the house. When the kids got home, I helped with homework and then would head to bed almost as soon as they would go down. I gave in and took my pain meds this past week as well as I couldn't tolerate it any more.

Thankfully, despite the crazy weekend, my shoulder appears to be doing a little better. Saturday was a fairly calm day with Cynthia attending a birthday party and a family grocery run. Sunday we ran nonstop so my shoulder pain spiked again but has calmed down a small amount. Even though I'm still in a fair amount of pain, having it ease up some which is nice. 

Pain can do funny things to a person. People with chronic pain learn to live with it often coming to the understanding that the likelyhood of it never completely going away is slim to none. During high pain situations, any pain reduction   is a nice break. the rest of the time we use various coping strategies and tend to develop a high pain tolerance. During my last right knee surgery in which a plastic surgereon closed a hole just below my knee, he told me I officially have a high pain tolerance. I recovered at home when the normal course of recovery would have been 4-5 days in the hospital.  What this really means to me and my family is when I have reached my max, I am in way more pain than the average person.  Thankfully this doesn't happen too often. My normal pain range during the day is around a 6/7 out of 10. Knowing other aut immune people, this is probably not out of the ordinary and is a way of life. 

Next time you run across someone who lives with chronic pain,  give them a smile but please don't say feel better because feeling better has varying degrees but is not something we can completely ever achieve.

Until tomorrow....  

 

Distractions are a wonderful thing

Distractions are a wonderful thing, especially when dealing with joint pain. Instead of focusing what is causing my shoulder pain for this post, I'm going to share some of the more positive things going on right now.

This morning Charissa and I were waiting for her eye doctor to come in the room and we started talking about her birthday. I asked her if she knew what month she was born. She replied "July" so I asked her was day. She replied " 11th" so I followed up with what year. She comes back with "every year" which made me laugh. She was right though as we celebrate her birthday every year, it just wasn't the answer I was expecting.

My kids are a great source of distraction for me. They make me laugh every day in one way or another.  She recently read her first real chapter book and got a 90% on the test. She had a huge smile on her face and I was thrilled she did so well since she was hesistent to take the test in the first place. Joseph tells me he is already on chapter 6 of his first Hardy Boys book that he started yesterday with a huge smile on his face. He is so excited to be reading this book and I am excited he wants to read since I know he is a great reader. Like any child, he just has to be interested in the book.  Cynthia was making me laugh last night at dinner. Josh picked up a Taco box from Taco Bell for dinner, I know not the healthyest but I had a migraine. Cynthia preceeds to read all the sayings on the various hot sauce packets and puts 4 milds on one Taco. I made her laugh when I asked her if she was having any taco with her sauce. For her first taco, she gave the mild sauce to Joseph but instead of saying mild she called it the "baby" sauce. This made Josh and I both laugh as Josh called mild salsa "baby" salsa the other day.  Aren't kids great at picking up everything we say and do whether we like it or not?

Often times on a particularly bad day, I use distraction as a way to not focus on my joint pain instead of reaching for any meds I may have in the house. Sometimes this works in my favor. Sometimes it back fires so when I do finally break down and take some meds for relief, they wake me up when I should be sleeping.

Napping is another great distraction my body uses to cope. I remember when my kids were younger it was a battle to go get them to take a nap. Even now it is a battle when we have one of them lay down because we know they need one badly.  As an adult I still fight naps at times, focrcing my eyes open when they start to shut while I am reading instead of giving in and crashing. Due to my various chronic illness, my body will shut down on me nearly every day and force me to take a nap. Usually this is some time between noon and 2pm. If I miss that nap time, my body will force me to crash at some point. Yesterday I missed it due to a pain management doctor appointment so my body crashed on me when I got home instead.  I really think for high pain or chronic pain situations, naps are your body's way of distracting you from it and forcing you to slow down. At least for me this often seems to be thie case.

Regardless of what I use too distract me, and there are many more things I use, the art of distraction is a very useful tool I use when coping with my ongoing pain in my joints. I just need to work on when it is appropriate to use distraction versus when I really should take meds to relieve my symptoms. It's an ongoing process.

Until tomorrow.

Falling down stairs is not the best way to start the day....

This past weekend was extremely crazy leaving me too tired to blog much.

 On Saturday we were at my son's Cubscout Pinewood Derby event from set up to tear down since we used the truck to transport the track back and forth.  By the end of the day I was wiped out as I was up most of the day taking pictures for the pack.  It was worth it though as we had a great day. My son's car won first place in his Wolf den and 2nd place over the entire pack. My oldest's car took first place in the sibling/parent/leader race. Charissa's car wasn't that far behind them either. We raced all our cars against each other at the end of the event and Cynthia's car won out of our family. al 3 kids cars were close though. Seeing the smiles on everyones faces was well worth the energy spent.

 Sunday I started the day slipping down my stairs and hurting my shoulder. This put me out of commission most of the day. I think I slipped on a piece of plastic laying on the top of the stairs.  We don't think I fully dislocated my right shoulder and I don't think I even partially dislocated it. If anything, I might have sprained it so we pulled out one of my old shoulder slings in order to get it to calm down. If it still smarting in a week or so, I will have t get it looked at by a doc but for now we are going the sling, rest, ice route. Would not recommend falling down stairs as a way to start a day though. It sucks. Hoping it will calm down soon.


This morning I was able to move my shoulder some so made my breakfast casserole for the kids. Unfortunately it was a little icy out so the trip to Calumet, especially once we got near the school, was a little interesting.  Thankfully I was able to get up to the North Columbus area for IVIG with no issues. My nurse mentioned my right shoulder was a forward sitting and mentioned the partial sublux idea. Neither one of us think I dislocated completely though. Only time will tell. Injurying this shoulder is not new to me unfortunately so I know how to handle it.

The week ahead should be relatively calm as long as the weather stops with all this ice stuff. My goal is to get the kitchen more decluttered Hoping to get most of it done this week.  Now to get my body to cooperate would be awesome.

Until tomorrow...I hope