Monday, December 31, 2012

I am Chronically Awesome

For those of you who don't know, there is an amazing, supportive group of people out there that have started a community where we, as people with chronic illnesses of all kinds (or our caregivers), can go to and know that we are still capable of doing so many things. There is now even a foundation, "The Chronically Awesome Foundation". This group offers resources such as blogs about anything and everything, online support groups, or even just getting tips or advice from other Chronically Awesome people. I'm sure most of you have seen the articles I've shared on Facebook, when you do see those you should read them, they all offer quite a bit of insight into the Chronically Awesome world.

The Chronically Awesome Foundation's mission is to cultivate and support a chronically awesome community of writers and artists, to educate the public, and raise awareness about their needs, and advocate for resources to fight conditions they represent.

Every once in a while there will be group writing projects. The first one is: What Does Being Chronically Awesome Mean To You? So I'm taking up the challenge and trying to define, in one blog, what being Chronically Awesome means to me. It's a challenge because my thoughts are jumbled and I've been feeling a little less than positive the past couple of months because of the broken foot and the holiday travelling coming up and everything that goes along with all of that. So I sat down with my journal and just began writing. I ended up writing six pages in my journal, so I obviously have something to say about the topic. Please bear with me while I attempt to unscramble my thoughts and words. I hope everyone who reads this can take at least one positive thing with them.

To me, being chronically awesome means so much more than just being chronically ill. I am not ill all the time (well, I am, but I don't always feel that way). I'm going to give a short (well, not really short since this encompasses about 32 years of my existence)background about me. Many of you already know my background, but many of you are relatively new to my life, so everyone gets to know it again. I have rheumatoid arthritis, fibromyalgia, osteoarthritis, osteoperosis, bipolar 2, chronic kidney stones, PTSD, migraines and generalized anxiety disorder. These are all chronic conditions for which there is no real cure. For the purpose of this post, I will be talking mostly about rheumatoid arthritis (RA), since that is the one I have been dealing with for as long as I can remember. I don't remember a time when this wasn't a very major part of my life.

I started having issues when I was about four years old. Some family members have stated over the years that the issues started earlier, that when I started walking they could see that something wasn't quite right. Which would make sense, since it seems I was probably born with this disease. As a four year old, all I was really able to tell my mother and the doctors that my feet hurt and hands hurt. Back then, there was very little knowledge about kids with RA, so that wasn't even what they were treating. The docs started out giving me shoes specially made for my feet, trying to correct the shape of my feet, which were already showing signs of deformities. These shoes hurt, so Mom bribed me with a cabbage patch doll if I would wear them.

From the ages of four to about eight, I was tested for everything from lupus to lyme disease. Yes, they ran the test to see if I had a positive rheumatoid factor, but I didn't. At around age eight, the docs decided to call it juvenile rheumatoid arthritis. My hands were already showing deformities and the physical and occupational therapists tried everything to stop it. There wasn't much in those days. We used finger and hand splints, leg braces, lots of PT and even more aspirin and prednisone. The doctors told my mom that I probably wouldn't be walking by the time I was 12 due to the deterioration of my hips and knees and the deformities in my feet. I was in a wheelchair from about age nine to about age 11 (off and on). I was unable to walk up or down the stairs. Luckily, I was a tiny little thing and carrying me wasn't too hard on mom. My brother also helped, though I still feel bad for the lack of attention he got because mom was so focused on my health.

I was put on methotrexate at around age 10. The FDA had just approved it for use in adults with RA, but I was one of the first kids to use it for that purpose. I know I am in a couple of medical journals (a number, not a name). At age 12, mom got a call saying I needed to be taken off the drug immediately due to some liver damage. During this time I was also given gold shots. Those were a horrific experience, and when mom said "no more" to the doc, she threatened to call child services on my mother. Needless to say, we dropped that doctor like a hot potato and I will never forget her name. She's probably the reason I will never again go to a female rheumatologist.

The rest of my chronic conditions were diagnosed from between the ages of about 18 to the present. I am not negating the seriousness of these issues, but these diagnosis were easier to come by and I was old enough to understand what was going on. Plus, lots of the additional conditions were a direct result of the RA, so they're just in conjunction with it.

So what does it mean to be chronically awesome? It means I can walk (even if I do need a cane or crutches or a rolling office chair sometimes), it means I do yoga, make cards, scrapbook, crochet, write, take care of my husband and child and allow them to take care of me, trust in God and have faith in His plan, love on my family and friends, take my medicine, lean on my friends, cry when I need to and laugh even more (because laughter really is the best medicine sometimes). I sometimes use sarcasm as a defense mechanism, but usually I just use sarcasm because it's fun :) I forgive those who need forgiving and help those who need it. I try to take things as they come, and always have a plan b to z. My life is messy, but that's no different than everybody elses life.

When people ask me what it feels like to have RA, it's never a short answer. I know what it feels like for me. It's a sharp throbbing debilitating feeling in every joint of my body, all the time. But really, since I don't know any different, this is my normal. I truly believe that if you were diagnosed tomorrow, your pain would be more significant than mine. You've spent your life feeling "normal", then this disease comes in and rips you apart. I feel for you, I really do.

Being chronically awesome means getting out of bed and doing what I can (and yes, sometimes that even means staying in bed). I have good days and bad days. It means I can be a total biatch some days, but I have friends and family who will allow that and my craziness and my snarkiness and my cursing self. I try not to do it often, but because I'm just that awesome, I know it's allowed.

Some days I can get out of bed and all I can manage is a shower, sometimes I can only manage to make it to my chair to sit for the rest of the day. Some days I manage to do everything a typical stay at home mom can do. Often, after those days, the day after I'm unable to do hardly anything, but some days I have two very productive days in a row. I am truly blessed and thankful for all the days. The good ones and the bad, because they mean I'm still alive and fighting. It really doesn't hurt that I have a stubborn streak about a thousand miles long. Would I be this stubborn and strong without RA? Or did the RA cause all this stubbornness? Which came first, the chicken or the egg?

Yes, life sucks sometimes, but doesn't everyone have "life sucks" days? I'm pretty sure that's not only for people with chronic conditions. I have moments when I cry and ask God why this all happened to me. What did I do to deserve this? But those times are really few and far between. When I was in the middle of my diagnosis and in my early teens, I cursed God and felt abandoned, but that part is pretty much over. I thank God for the life he has given me and the people he has put in my path. I have a husband who takes care of me (when I let him), and whom I take care of. I have a son who is amazing and loving and caring and funny and gracious. I have a family (blood, in-laws and friends) who would and have done anything and everything for me. I have a roof over my head and food in the fridge.

I have so many things to be thankful for, how could I not believe this is an awesome life. How could I not be chronically awesome. Do I wish I didn't have all these illnesses? Hell yes!!!!!! But I don't believe I would be the same person if I didn't. And, for the most part I love the person I am. I love the people I surround myself with and who choose to be with me and my crazy self. I am chronically awesome. Very very awesome. The chronic part is just a part, not the whole. I'm just plain awesome. I truly believe that with every particle of my being.

So I walk out the door, sometimes with a cane, right now with crutches. Sometimes I cringe in pain and sometimes I don't have to. But I always try to walk out with a smile. When someone asks me how I'm feeling, very rarely to I just say "fine". I will usually tell you if I feel like crap, I will always tell you if I feel great. But even in the crappiness, I try to smile, because this is a good life. A very very good life. I may have some chronic conditions, but they don't have me.

I hope, that in my awesomeness, I can help people with my experiences, giving people a sounding board or just offering a smile when a person doesn't think there's anything to smile about. I can help people, whether they're chronically awesome, or just plain awesome. I believe this is, at least in part, what I was put on this earth for. Where it takes me in the end, I've yet to find out. But someday I will, and I know I've done all I can to help myself and others. Because I am so incredibly awesome.

Wednesday, December 12, 2012

A Mother's Strength

This time of year, I think a lot about my Mom. She was an amazing, strong, funny, sarcastic, loving, giving, kind-hearted, awesome individual. She was my best friend. She was the one who supported me through almost everything I ever did. Whether it was getting the grade or walking when the doctors said I wouldn't be able to, she stood by me.

This morning, I watched Soul Surfer. In this movie, the main character loses her arm in a shark attack. She went from being a champion surfer with a sponsorship to having one arm and having to learn a whole new way of doing everything. Her Mother stood in the background watching her daughter struggle and the emotions pouring through her were palpable. She wanted to protect or daughter through it all, whether it was from the press or her pain or anything else that was thrown her way. I know the movie wasn't about her Mom, but for some reason, I focused on that.

I have often wondered how my Mother felt through all those years trying to find a diagnosis for me, and afterward, when I got the diagnosis of Juvenile Rheumatoid Arthritis. How she felt when, at eight years of age, the same doctors told her I probably wouldn't be walking by the time I was twelve. What did she go through every time my medications were changed, or when doctors called first thing in the morning to tell her to immediately take me off a medication. Sure, I heard her cry from behind closed doors, and she told me at least a thousand times she would take my pain if she could. But really, what was it like for her? To watch her only daughter suffer through the not knowing and the pain and the emotional issues that went along with it all.

I have a better idea now that I'm a mother to a child with special needs, but I'll never know exactly what it was like for her. We were blessed to get an early diagnosis and early help where it was needed. My Mom didn't have that little measure of peace. She had to deal with the question of what was wrong with her baby girl from the time I was about four, until they finally put a name to it when I was about eight. Four years of not knowing what was going to happen to me, then the knowing that I was never going to be normal or be able to do so many normal things. She did it all while showing me, at least what I could see, her strength and courage. She held me up when I most wanted to just give up.

It is because of her and God that I am where I am today. I am amazing, strong, funny, sarcastic, loving, giving, kind-hearted and awesome. I may be a little broken physically, but I can always pull through. Thanks Mom for teaching me and supporting me and loving me. I love you and I miss you!

Wednesday, December 05, 2012

I'm Still Here

Gah!!! We moved into our new (to us) house on March 19th, 2012. Geoff's Mom and Dad cam up to help us unpack. Seems they needed to be here for other reasons. On March 23rd, Geoff was hospitalized. He had tested positive for having the gene to have an enzyme deficiency when he was a teen. Seems he DOES have said deficiency. The condition is called Acute Intermittent Porphyria. It causes quite a bit of pain and pain can be a trigger. He was in the hospital for a week on lots and lots of meds. He was close to comatose for the entire time, so someone needed to be there with him the whole time. Bev and I tag teamed for that. One of us was always her to get Michael of the bus and one of us was always at the hospital with him at all times. I usually slept there. At one point his blood oxygen level went down to 39, so we were all paying special attention to that. He came home the day before Michael's 4th birthday, which is April 1st. Geoff's Mom stayed until he was out of the hospital and for a few more days after that.

Michael's birthday went off without a hitch. We had it at a bounce house. All Children were happy and no parents were injured :) So now we have a great 7 year old boy. He's been healthy all year :) April was relatively quiet. Geoff did half days at work for the first week back, then he was on a normal schedule. Eating alot more, but on schedule. He needs to do high carbs and protein to try to avoid another episode. Plus, he had lost about 15 pounds. He needed to gain that back. We were all settled in and moving swiftly towards Geoff's sisters (Theresa) wedding. We were all to be in the wedding. Geoff as usher, me as a bridesmaid and Michael as the ring bearer. We were all getting ready for May 19th and the wedding of Theresa and Kevin.

On May 6th I went into the Urgent Care. I was having cramping and lower back pain. I KNEW it was probably a kidney stone, but I was hoping different. Sure enough, scan showed a few kidney stones. Given meds and told to go home and drink lots of water to help pass (yeah right). On the 7th, I went to the ER. They did another scan and found that one of the stones was stuck in scar tissue from previous stones. I was admitted by 8:00am on the 8th. The docs immediately put me on high levels of pain killers. Evidently my body has enough pain, that it takes alot to reach extra stuff that happens. I was put on a dillaudid drip, a fentenyl patch and oxycontin pills every four hours. The docs wanted to give me a couple days to see if it would pass on its own. It didn't. So I went into surgery on the 9th. When I woke up, I was told the surgery didn't go as was expected. They had to put a stent in my urinary tract where the scar tissue is. They were afraid that section would collapse. Instead of having it in for a couple days, it was going to need to be in for a few weeks. The stent moved everytime I moved, causing a great deal of pain. So I was in the hospital for a few more days on large amounts of meds. More than one doc came in the room wondering how I was awake, considering what I was on. By the 11th, we knew I wasn't going to make the wedding. I called Theresa and she was glad I was going to be OK and at least Michael and Geoff would still be attending. I was released from the hospital on the 15th. I spent Mothers Day in the hospital. Thank you to all my friends who came to visit me in the hospital, took the kid so Geoff could come see me and/or brought food to the house to keep me chair bound (since the stent was still in the body).

When I got home, things went as expected, except for one thing, a couple days after I got home, I was talking to Bev, and she asked how Geoff was, that he had called her and told her he hadnt been feeling well. He had called his doc. He was having a mild "episode", so I asked Geoff about it. He said yes, he was having an episode, but mild, so he was able to go in every other day or so for infusions of glucose (helps the attacks). He hadn't wanted to tell me because I was having such a bad time. So, he got to call his baby sister to tell her none of us were going to make the wedding.

After the wedding, Geoff's mom came back to take care of us some more. Thank God, Geoff was able to avoid the hospital stay this time. Mom stayed with us a couple weeks until the stent removed. She even removed wall paper!! I was so excited about that, especially since I wasn't able to do anything but sit. I sooooooo love my mother in law!! Actually all of my in laws!!! Summer went fast and uneventful, except for figuring out what all is planted in my back yard.

Then in July, we got Spot. He's a Brittany Spaniel and adorable!! Beginning of August, I decided to fracture my foot again. I was put in the walking cast (boot).

Then Michael and I took our annual trip to little rock, but we flew this time. We stayed in Little Rock for 2 weeks and had a great time. When we got home school started and doctor appointments and a short bout of Bronchitis for Michael, then for me. Then Geoff was in Dubai for a week (and only got me 3 lousy pictures!!!!) But he did bring me swiss chocolates from his layover in Zurich and perfume from the duty free shop:) I was then told I had fractured two more bones in my foot while in the boot (yes, same foot), but the original bone had healed. Three weeks ago I was given a fiberglass cast going from my toes almost to my knee. Then I was told it would have to stay on until mid-February. I'm totally non-weight bearing and on crutches. I've been using those and a rolling desk chair around the house. That works pretty well. Fun Winter for Daina and the rest of the Syracuse Stocks!! In a couple weeks we'll go to Little Rock and then St Louis for Christmas. This year we're flying. Trying to decide if that's gonna easier or harder.

Good thing about flying is that we have a 5 hour layover in Chicago. So I get to see Shannon and Brad and all the girls for breakfast that day :) Michael is doing well in school. Fitting in and trying real hard. He's being so very helpful with me on crutches. He brings me things and is cleaning up after himself well. That's all for now. Thanks for reading. And I promise, things will get better!