Yep, it’s been another month since my last LONG blog. A lot has happened as you could guess from my title of this one. I do have a very legitimate excuse why it’s taken me another month to write. This would be alluding to camp, which led to my ER visit. Yes indeed.
So, Camp Chimer. What is it? It’s a camp for children ages 9yrs-17 yrs old that are currently on kidney dialysis or that have had a transplant, or that have special needs and they are affiliated with the Dream Factory Kids. Children on dialysis or those that have special needs such as being blind or hearing impaired- cannot go to a normal camp. They cannot participate in normal camp activities such as hiking, climbing walls, swimming for various reasons. So, this Dr from Children’s Mercy Hospital partnered with Dream Factory Children 25 years ago to create a safe and fun environment for kids to enjoy camping. This is what Camp Chimer is.
I was a counselor this year (for the first time) as my social worker at the clinic, my delivery guy that delivers my dialysis solution, and a couple other former counselors highly recommended me to at least try it once. So, I did. Well, the week prior to camp my car starts making a rattling noise that apparently was coming from inside the engine. I had to get it fixed; however, I didn’t want to take a chance of driving an hour away and then getting stranded; so I called the National Kidney Foundation to inquire about carpooling. I was connected immediately with the Camp Director and she was gonna research the group of counselors to see who lived near me that I could carpool with. The kicker was that not only did they need to accept me, my luggage for a week (and you know women do not pack lightly); but I need to bring 4 boxes of dialysis solution which weighed about 25-30lbs each. This is a lot to ask of a stranger. Nevertheless, God provided 3 gals to ride with and they totally understood my dilemma as they had been on dialysis previously, just a couple years ago. Of course, it always helps to offer gas money! So, I meet up with the gal that drove- she has a mid size SUV. I seriously took up the entire back of the car! I was embarrassed. She insisted not to worry about it and she totally understood. Needless to say there were 2 other gals that were carpooling- the last gal we were meeting up with had to drive her own car and the other gal went with her so we carpooled 2 people per car.
We made a pit stop at Walmart. Apparently, there is no salt at camp so the gals (as they have been before both as campers and as counselors) shared with me that we need salty snacks. It was quite entertaining shopping with these gals. One gal would point out something she was craving- another gal would quickly interject: “you cannot have that.” We arrived to the dorms about 11pm. I got to meet my co-counselor, Kelly and it was her first time too.
The next day (after no sleep the night before) we had to attend a mandatory 4 HOUR orientation. After this long training, our campers would arrive. We got our 1st camper and then she kinda disappeared. Kelly and I decided to lay down. Of course, we both fell asleep. We awoke a good hour later to find we still had no campers. We go out into the commons area to ask and learn our other 4 campers were coming from St. Louis by train. Kelly and I decide to go find our 1 camper. We felt like we had abandoned her. Luckily, she didn’t feel that way. We had another orientation for the campers. We had to do a skit based on what rule we were given and the campers had to guess the rule. We learn during this time the poor St Louis kids had gotten dropped off at the wrong location and had to wait for the bus to pick them up. They were delayed a couple hours. (in the hot heat of at least 100 degrees)
I discover I am co captain of a team. I’m on the Orange Outlaws. They asked us to pack an outfit that we didn’t mind getting dirty. Boy, they were not joking! These games they came up with were some of the zaniest, filthiest games. Lots of fun to watch the kids play! There was a banana split slip and slide with cherries,chocolate syrup, cool whip, and bananas. There was a chili toss. Water balloon relay where they had to dip the balloon in a condiment and pass it to the next kid on their team. One of the best ones was leftovers- they took the leftover food, mixed it together and kids had to dig in the bowl with their mouth to find certain objects. Gross! I had the pleasure of getting painted with cold cool whip, then hosed down with cold water. It tasted good!
This year was a special year at camp as we celebrated 25 years of the camp being founded. They brought in special guests- some of the orginal nurses/co-founders; other memorable campers. It was neat. The men served us dinner in their formal Tuxedo Tee Shirts. Parents were welcome for Reunion day. After dinner, I went back to the dorm to do my dialysis before the dance…little did I know the problems I would have. I won’t go into any graphic detail. I will say that I was all alone and needed a nurse. God and His angels were definitely watching over me! I heard someone voice and lo and behold across from my room was another counselor coming out of her room. It was one of the gals I carpooled with. I told her to go get a nurse. So, in comes a nurse and the camp director. I explain what’s going on and she’s pretty non chalant saying it’s normal. I’l ask the Dr. if we can give some medicine. Keep an eye on things. Little did I know that I would still be dealing with the same matter for the next 3 days and end up in the ER…
I made it to the dance very fashionably late and certain folks did notice my absence. It was quite comforting. I did not dance as I didn’t feel up to it. I socialized.
The talent show was the next day as we all had to particpate. So, our girls, Kelly and I stayed up quite late concocting our skit. Our room was called The Chick Flicks. So, I came up with the idea of taking a popular chick flick, “How to Lose a Guy In 10 Days” and create our The Top Ten Ways to Turn Off Guys at Camp (Keep them from hitting on you). We had examples like: Bad Hygene, Too Much Make Up; Conceited; Belching; Farting; Annoying Laugh…. we got the most laughs at the talent show and thought we had won. We didn’t.
The next day I could tell my blood pressure was high- sure enough it was dangerously high- 165/110. Yikes! The Dr. and nurses were all very concerned about me. I ended up being put on one of the camper’s dialysis machine cycler to pull off more fluid. My weight was up like 6 lbs and my feet were always swelling. I didn’t bring any other type of fluid with me so I had to use the 6000 cc bags for the machine. I also ended up doing my treatments every 2 hours to pull off these extra pounds of fluid. It definitely helped as the next day, I had dropped the 6 lbs and my blood pressure dropped to something like 143/90. That was not a fun day!
The other issue I had was bleeding. As you know, I have been on my blood thinner for 3-4 months now and well, I was losing blood in other places. I called my Dr and she said that if I started to feel weak or dizzy I need to go to the ER. Well, a few hours later, I started feeling weak and dizzy. Because I had carpooled, I couldn’t just leave. One of the very kind nurses who lived 20 minutes from camp offered to go way out of her way (45+ min) and take me home. Wow! I made it home and went straight to bed hoping to sleep off the dizziness. After my long 2 hour nap, i was still dizzy and had to go to the ER.
You know those commercials and billboards you see about only waiting like 20 minutes for the ER? I think I waited 10 and was admitted to a room. That’s impressive! It used to be at least an hour. So, I put on the fancy gown and have to get an IV. Surprisingly, the nurse got it on the first try! I congratulated her. She pointed out how much I bled all over the sheets, down my arm… So, had some tubes of blood drawn to test and find out what’s wrong. Turns out, my blood had thinned out too much. Two hours later, I am released to go home. I took it easy the next few days…i am proud to say, I didn’t have any swelling and haven’t had any since I got home from camp. I did get my blood tested 2 days later and it went the opposite end of the spectrum- too thick. Aiyayai…stop the madness!
Well, looking back at my calendar…Friday, Aug 5th- I celebrated one of my dearest girlfriend’s boyfriend’s birthday. I danced. It’s been at least a year since I have gone dancing. It was so much fun; yet very tiring. I felt so old sitting down after 3 songs. I just want my normal, vibrant energized self back!
I have been keeping very busy and satisfying my baby and children cravings. From watching my lil favorite guy Nicholas, I got 2 referrals. I watch 3 kids every other Sunday morning from 6 :30a-10:30a. They are pretty good kids- twin girls that are 6 yrs old and a 3 yr old boy. I am having so much fun with them! I love fixing the girls hair! I am still praying the Lord finds tremendous favor on me and my hearts desire to not only have children, I would absolutely love to have twin girls! My other referral is a 6 month old boy. What a blessing to have both these opportunities! Watching him, I sometimes have to switch up my schedule to accommodate my Dr appts. The parents are extremely understanding and also quite flexible.
Speaking of Dr appts- this brings me to the last of my subject heading- “not eligibly active.” I had an appt just last week to meet the transplant team. This consists of the social worker, the dietitian, the nurse coordinator, and the surgeon. It’s at least a 2 hr appt and the surgeon only makes these for mornings, either Mon or Tues. I made it for 8:30. We had to wait 30 minutes before we were even called back! This messed up my schedule to watch the baby; my dad’s schedule (he had a meeting); and my friend’s sleep schedule. Why are Dr’s entitled to make us wait on them? They know we have to be there at their cost (literally). Our time is just as valuable as theirs!
So, I meet the surgeon- he’s dressed to the nines- very sharp crisp purple checked button up shirt with white french cuffs, cuff links, a purple striped tie, pointy (probably Italian) leather polished shoes, argyle socks. And here I am in a tee shirt, comfy drawstring pants and my pink hair! I felt under dressed. I’ll get to the pink hair… He’s pretty laid back personality. He explains he has to cut me on the opposite side of my previous incisions- it’s best to start with a fresh area. Great! Another frickin huge scar! Oooh yay, they’ll be matching! He also shares that he’ll take care of the hernia either 2 months prior to my transplant or 2 months after. Oh boy-another surgery! He told me that things would not probably happen for at least 6 months. I have not hit my minimum time of being on the list for at least 2 years yet. I have 1 year and almost 4 months. After I met the team, then the team has a meeting to discuss the patients. This could take up to 2 weeks to get approval. My nurse coordinator calls me the following week and lets me know what they decided. I just got the letter in the mail stating their decision. “…we look for people that have the resources to support on-going transplant management. To activate you on the transplant list we need further assurance of your financial stability. We ask you show resources in the amount of $5,000.00 through either savings or fundraising to meet future medical/premium needs after transplant.” What this means is- I will remain on HOLD status until I have at least $5,000.00. I contacted my congressman asking if this was even legal? My friends and family are appalled! So is my social worker at the clinic-she’s never heard of such a thing!
My plan of action- sell many tee shirts. I have my website now launched. I have spoken with some chamber members today. I will need to join. I have talked with some pastors at my church-maybe we can put an announcement in the bulletin? I will probably partner with a larger foundation to handle all the legalities of becoming a non profit myself (501 C3). I’m thinking of different fundraising ideas like concerts of local bands, fashion shows, bachelor/bachelorette auctions, calendar… I welcome your ideas and your help in organizing these events!
My pink hair- I did the Susan G Komen Race for the Cure Sunday, Aug 14th. I wanted to do something fun- I went to Walmart at 5:30 a.m. hoping they were starting to put out Halloween stuff…not yet. The clerk guided me to the cards and gift wrap aisle. There was pink glitter hair spray for like $2.50. Sweet! This will work. I sprayed it in my hair. Little did I know that when I met the surgeon the next day that he likes to have pictures of all of his patients! What can I say? I always try to be memorable!:D
Well, this is truly, my absolute longest blog to date. Thank you so much for taking time to read it. I do hope you enjoyed it!
Please go to my website if you haven’t already. Please share it with your friends and family. If you find it in your heart to give a donation- you will be blessed.
Thanks always for the encouraging love and support you continue to give me!