So often the hardest part about being chronically ill is finding your zen. You spend a lot of time waiting for the “other shoe to drop.” You either have things going really well and you are waiting for something to fall apart or everything is falling apart and you are waiting for what else could possibly go wrong. The real trick is to find a neutral space in all the medical chaos you often find yourself in and just try to stay in a peaceful mindset.
It’s not easy and I am no expert on this one! I often find myself drifting into the chaotic world of what could possible go wrong next! I really have found humor to be a good outlet for myself because if I can keep laughing I find I stress less. Notice I said less, not that I don’t stress, because I am human, but I stress less. I try to explain how I feel to the doctors but even after so many years of the pains it’s hard sometimes to explain what is going on. It’s hard to explain how I feel, I get tripped up over my own thoughts and words and the more I get tripped up the more anxious I get. The more anxious I get the more I get tripped up and the cycle continues.
I think for me I have learned to just pause, take a minute to collect my thoughts and start over. I try to take a deep breathe and collect my thoughts and realize that I don’t have to be perfect. I just have to explain the best I can. No one can feel the pain like I can so I have to be my own advocate but if I’m not telling them the whole truth they can’t help me. So sometimes I just have to let them know I’m overwhelmed. Let them know how I’m feeling and then go on from there.
No one is asking you to be superman or superwoman. They are just asking you to be you! They are asking you to be truthful and honest and help them help you. Learning to be gentle with yourself is hard, but worth it.
Okay fess up who doesn’t like a good NAP? I mean I really think the Spanish have it right with siestas in the afternoon! Take a nap go back to work, you feel refreshed! As a child I stopped napping at 6 months which my poor Mom had to put up with, as an adult I take a nap about everyday now…I think I am making up for lost time…sorry Mom! My Mom really is a saint! She takes me to my appointments, helps with taking me to do odd errands like going to the bank, post office etc. When she jokes about that I am her full time job she’s not kidding!
I am really grateful for my Mom and how much help she has been these last couple of years with getting me to these appointments. I don’t know where I would be without her. It’s been nice to spend some extra time with her. Of course when we spend all this extra time it doesn’t feel like quality time because its always around medical appointments. I am seeing this doctor or that doctor, I’m getting this or that test run. So every once in awhile she and I will pick a day and just go out. We’ll spend some quality time together that is not around some medical appointment or procedure.
I know that my whole life is not going to be based around doctor visits and medical testing but right now that’s what it feels like and it’s exhausting! I have all these pills to take, all these blood draws and tests plus physical therapy. I’m always at this doctor or that’s office for some sort of check up. I have this test or that test coming up. My calendar is already filling up for December and we haven’t even hit September yet… life of anyone with a chronic illness!
Heat + Asthma = sitting in the A/C wishing for better air quality outside…..so it’s summer and I’m usually good with summer until it gets to be the 90 degree days. 90 degree days is when my asthma goes STAY INSIDE!! So today is one of those days where my asthma is calling the shots. I am chilling inside goofing off with friends on the Internet trying to remember life before I was broken!
It’s hard to remember what it felt like before I was broken. I seriously don’t really remember that time, I think it might be like when parents don’t really remember what life was like before kids. You can reminisce but it’s not REALLY the same. I mean you tend to make it all rainbow and butterflies and think about how wonderful life was before children because you don’t think about anything bad. I mean why would you? You tend to think about your life without children when the children are drawing on the wall with marker covered in chocolate syrup and they need a diaper change. You don’t think about your life before kids when they are perfect! So thinking about life before I had SO MANY MEDICAL ISSUES is similar. However I find it hard to really remember what life was like because pain consumes me now. It’s hard to remember that I actually had a time in my life when I didn’t have pain running through the back of my head. When I didn’t have to think about every step I took, I didn’t have to think about is the handicap stall free in the bathroom? Will I be able to get those jeans on over my knee braces? How far can I physically walk before I need to sit and rest and will there be a chair/bench/resting spot? Which stores can I walk around in and which stores do I need a wheelchair for? Every outing I have a million pieces that I have thought about, and planned including do I need to bring my blood thinner with me? Am I going to be out late enough that I need to bring my blood thinner with me so I don’t miss a dose?
Most people my age do not have a mental check list when they want to leave the house I do out of necessity. I have to make sure that I will have everything that I might need do to my disability. I did not think this would be my life at this age, but I know that I am meant for greatness.
I think I have mentioned before that I am super allergic to Lysol™ like I go into anaphylaxis allergic. The first time I remember having a serious reaction I was in high school and one of the guys in band sprayed some Lysol™ on some equipment and my eye swelled shut! The next time I had breathing problems and ever since especially with the aerosol varieties I have immediate breathing problems that can get pretty severe. So I use other cleaning products.
That being said I don’t expect people around me to use other cleaning products but my friends are aware of my allergy because it is so severe. My doctors offices are also aware of it because it is so severe. I also had to let my university know because they had cans of it in the bathrooms and people would spray it and one time I had an asthma attack in the middle of class because I used the bathroom and someone sprayed it while I was in the bathroom. Thankfully I was not near the person or else I would have had to go to the hospital that time, it was a close call!
So when someone wants to use Lysol™ I leave. I will not jeopardize my health for it. It’s nothing against the person, I just remove myself. Tonight I was sitting watching a show with my friend and another friend got up and was straightening up. All the sudden I SMELL IT. I smell that all too familiar smell, so I look over to the counter and my enemy sits with the top wide open, so I get up tell my friends good bye and leave.
I get outside and the coughing begins. I coughed and coughed and thought this is why I hate that crap. I did make it the short walk home, and then I made it to the bathroom (I was afraid I would vomit. Often after a violent coughing spell I vomit). I was able to calm down and so far so good, and I am thankful it was just the wipes. The wipes don’t tend to have as bad an effect as the sprays do.
So now I stay up a bit to make sure my lungs are recovered before going to bed because it’s late. At least I had seen the show so I know how it ends.
So I was in the ER last Wednesday with chest pains and the only thing I can tell you for certain is that laughing brings them on. I was at a meeting today and I got laughing so hard for a minute I thought I was going to pass out from lack of oxygen. I was laughing because I was having such a good time and then the room started spinning and I started to panic and I realized I just needed to BREATHE. I started to take slow deep controlled breaths and focused on an object, and just breathed. After the room slowly came to a stop I asked Mom for some water to which she clued in that I wasn’t feeling alright. After a couple sips of water I started to feel okay again.
BREATHE!! BREATHE! You will be okay as long as you DON’T FREAKIN’ LAUGH! Please! Asking me not to laugh is like asking a child not to eat a free ice cream cone! NOT GOING TO HAPPEN! I was talking to my cousin, yes the favorite one, I get paid money to say that you know, on the phone and I got laughing so hard I said to him stop or you’re going to give me chest pains again! He of course not realizing that I was being totally serious made some witty remark and got me going again. So I say to him no I’m actually being serious stop for a minute. So I calm down. Tell him about the laughing and the chest pains and then we keep going.
I’m too young for all this, I want to go back to being 4 and a half WITHOUT the medical drama! I liked it better when I had time to color and play in my pretend fort! Now I don’t even get to play in my fort because I hurt to bad. The only thing with this chest pain I have figured out is that laughing aggravates it which is annoying since I LOVE to laugh, I love to make other people laugh. Laughter is normally very good medicine, but not for me, not right now!
I will be the first to admit I procrastinate horribly. I will find everything in the world to do first and then the 5 minute job will be done last. So I have needed to schedule a c-spine cat scan and I keep putting it off because I am afraid of the results. I’m pretty sure they are going to find damage. Why am I pretty sure because when I was a little girl I was in a pretty bad car accident and they thought I broke my neck. By the grace of God I did not. When I was 18 I don’t remember why I was at the chiropractor but we found out that my neck was misaligned from that accident. So we know I went years with my neck not being quite right, then when I was teaching I went for a evaluation and once again I was told there was damage to my neck so when my spinal specialist raised concerns about damage to my c-spine I knew it was time. So we are doing a cat scan of my neck to see what is there. We know I have degenerative disc disease in the low back, plus the arthritis so we’ll see what else we find. I know knowing is better than not knowing but some days I think ignorance is bliss.
So I have chest pains so I’ve been trying to keep low key today and when I try to keep low key I get bored to the nth degree so I started making all these memes for fun. I think I made about a dozen or so. I just kept looking through pictures, looking through ones that had already been made. Found ones that were cute, found funny ones, found stupid ones, found ones that I wish I had the power to delete! Wasted way too much time on that webpage and then decided to heat up a couple of slices of pizza from last night.
I really wish they could tell me what the chest pain is. I’m so over it! My oxygen stats are fine, my heart rate has been okay and it’s not my asthma. So what is it? I’m so tired of not knowing what is going on. Of course with every answer comes the knowledge of my body not being happy with me. I sometimes wish I could go back in time when I didn’t have so many medical diagnoses to balance/juggle, but I take each day one at a time.
I think if I have learned anything its that I have a voice in all this. It’s not that I am better it’s that I am learning to stand up for myself. I am learning not to just run and hide. Not to just pull the covers over my head. Sure there are days where that’s all I want to do, but I am tackling problems one at a time. Life is rough but when you focus on what you can do to change things it doesn’t seem as bad.
I have a lung infection. So that might be why my INR dropped this week, but of course there are a lot of variables with INR. So I go into the doctor’s office and I give the nurse all the symptoms and then the doctor walks in.
Doctor “How are you?”
Me “Oh I’ve been better. I came in today to borrow your stethoscope, your ears and your vast medical knowledge. You know I went to school to be a teacher not a doctor!.”
Doctor chuckles and shakes his head and points his hand to the table so I can jump up so he can listen to my heart.
So as you can see I have a really good relationship with my primary care doctor. I joke he laughs and shakes his head. He checked my sinuses, ears, nose and throat. Listened to my heart and lungs, checked how my scars looked on my back. I made a crack about that I bought 5 got one free. Well you know I like to keep it light. He asked about my oxygen stats when I told him I had felt light headed but my oxygen has been high. So the conclusion was LUNG INFECTION!! YAY….not so much, but not really all that surprising. I mean I’m asthmatic, I’ve already had pneumonia once this season, so we are going to do medicine and see if I get better. If I don’t feel better, I am to return, if I get worse go to the ER. So lots of fluids, rest I know the drill.
Ahh the joys of blood clots, asthma and chronic illness.
So everyone has been posting pictures of the jars with the pieces of paper saying for 2016 keep a jar and when good things happen write them down and stick them in the jar and then on New Year’s Eve open the jar and read all the good memories. Well….I tried this for 2015 I started writing down the good stuff and then I lost the jar. No clue what happened to it. I’m sure its around here somewhere, my guess is it got put in the garage only because I haven’t seen it! That’s my answer for everything it’s in the garage! haha Not really but it sounds good right? So looking back on 2015 I just want to say it was not all bad. Sure I had some really bad health things happen *coSaddlePulmonaryEmbolismugh* but we had some really good things happen so I want to list some of the good things. I don’t want you to think that everything was bad this year. I don’t want you to think I hated 2015 because that is not true. It had some bumps in the road but it wasn’t all bad.
Nephew was born!
Wife got a couple of promotions at work!!
Got a couple debits paid off
Sold my car (okay so this one was bittersweet)
Had Christmas with our family at our house this year
Mom bought me Purple Canning Jars for my Birthday
I did well on my March Maddness Bracket
I got my Spinal cord stimulator implant!!!! (Yes this was a positive)
I lost 50lbs this year
Wife was in 2 art shows
Wife started selling her prints online and sold at a couple craft shows
I know there were a lot more things, but that just gives you a taste that things were good this year. I want to do the jar again this year, but I am going to make a better effort at not losing the jar! I do think it is really important to count your blessings. I joke about my health and almost dying and people think I’m weird, but funny. I know I’m weird. I accept my weirdness. I am so blessed this year it was a very emotionally year for us but we are still standing. Tonight we are planning on a quiet evening because that’s what we need. My chest is still hurting my oxygen stats are all over the board they are between 96%-99% when I am sitting on the couch but they will drop down to 85% so I know something is going on, but I can’t put my finger on it. I have a feeling something is off but I just don’t know what and when I can’t describe what is off it’s hard for a doctor to help. Wifey was watching last night when it dropped down to 85% and then jumped back up and she goes do you feel different when it does that? And I go not really, my chest hurts and between my chest hurting and my back hurting that’s all I’m registering right now. So we’re monitoring closely and ringing in the new year at home and counting all our blessings. We are too blessed to be stressed right? That’s how the saying goes at least.
Ahhh it’s that time of year where Mother Nature is bipolar and the temperatures outside have gone from 70s to today the high will be 54. Yeah, fun times or as I like to call it pneumonia weather! Yesterday my chest was bothering me which I have been told is normal. Today my chest is hurting me, which I am wondering because of the wet crazy weather we are having if I am coming down with pneumonia again. So when I was in ICU the nurse asked me about if I had gotten a flu shot, no, do you want one no. Did you get a pneumonia shot? No and I apparently have pneumonia…do you want a pneumonia shot? I think its a little late for that one! So I take that as a no too then…YES! That would be a no, then I start laughing and then it hurt and I regretted laughing, of course I was on oxygen at the time and that helped, but it still hurt.
So on Christmas my brother in law was sick he had a cold, then yesterday I was holding the nephew who was cranky and had a fever but we’re pretty sure he’s just teething. I think I need a shirt that says “Keep your sickness, I’m good!” I know it’s that time of year, and trust me I would have held the nephew just like I did yesterday and cuddled him because that’s what he needed. I used to do the same thing when I worked daycare and even when I taught I would comfort kids when they are sick because that’s what you do. Of course when I taught if they had a fever they went to the nurse, but during allergy season the kids feel bad but they can come to school they just sneeze a lot.
I just keep washing my hands and hope that I don’t get pneumonia again, once was enough thank you very much. I also get bronchitis a lot so we watch out for that too, being asthmatic my lungs don’t like to breathe and now that I have a blood clot trying to help slow them down…. All is well. It’s almost the end of 2015, 2016 will be here before we all know it and I am excited about the fresh start. New year new goals, new adventures. New life lessons right?
A forum that I was reading asked an interesting question… “If you could rid yourself of one chronic illness which one would you get rid of?” Many people posted I would get rid of this one or that one. Most chose the one that causes the others which makes sense. I read the question and I thought the back pain first and then I thought maybe the neurological issues, but then I thought well those are supposed to go away at some point so I don’t want to waste my magic wand so yes the back pain. Then I thought no maybe I need to get rid of the arthritis. The arthritis has been causing issues so maybe now that the back pain has a solution I need to get rid of the arthritis and the more I thought about the question the more I realized there was not an easy answer!
So then I decided maybe I could just save the magic wand and decide next year! I mean they didn’t say I had to decide NOW. I could wait see what shakes out and then think about what really annoys me the most and in the coming year make a decision. See most people given a magic wand could choose one illness to get rid of because they only have a few major health problems.
Last night I was on Facebook and saw this picture of a baby Chewbacca and the meme said that if heartburn during pregnancy meant the baby was going to have hair than they must be giving birth to a baby Chewbacca and I LAUGHED. I laughed so hard the cat got scared and ran away, like hid! I was laughing and laughing and Jenna looks at me because I’m laughing so hard tears are running down my face, I can barely breathe. She’s asking what I’m cackling over which of course makes me laugh all over again, and then I see the picture of baby Chewbacca and the baby bottle with the bite out of the bottom and I start laughing. So I finally put the laptop down show it to Jenna and say I thought of my sister! Which of course got Jenna laughing. My sister had terrible heartburn with her first pregnancy and my niece had a full head of hair when she was born.
The cat survived, she came back eventually, you would think she would be used to me laughing at this point. Every once in awhile I get to really laughing uncontrollably and she doesn’t like that. I find laughter is good medicine which is why I like to joke. I joke a lot. I joke about everything I possibly can because I can and I think it’s a gift that I should share. When I was in high school I took drama and the teacher was amazed at how well I did at improv but it’s because I like to be random and silly and I can think on my feet.