So I was cleaning out some boxes and I found some old blood work and lo and behold I was tested for Factor V about 10 years ago. Did I remember this? NOPE! Apparently my doctor felt I might have a blood clot disorder. Was he on the right track? Absolutely! Did he do enough testing? No, was this his fault? Absolutely not! The clotting disorder I have is not routinely tested for. Had I remembered that I had been tested for Factor V this would have really helped the doctors back when I had my massive blood clot, but such is life.
So my filter was removed, the allergic reaction has healed, but I still have some research to do on why I had the reaction. Got to love allergies! You got to take life one day at a time!
I was trying to be more active, and in return for trying to be active my pain level started increasing. My hips started hurting, so I ended up being benched! So much for trying to be more active!
I also am finding that with my new weight loss…my knee braces are getting too big again….yes..I just got new braces and these are already too big…oops! So I might need to get new ones again which is a good/bad problem to have!
Life is always an adventure so set sail and enjoy the ride!
Why be normal? I mean normal is overrated right? This week has been a lot of crazy feelings and wanting to jump through the phone. There has been a lot of turmoil from one person not doing what they said they were going to do 3 weeks ago and it blew up in my face this week. So I spent the majority of this week scrambling to try and get it fixed.
Of course on the upside of my week Mom took me clothes shopping last week and I got to wear shirts that actually fit and that made me feel good. I have been losing so much weight that the clothes that I currently own are getting bigger and bigger on me. Mom told me it was time to get some shirts that fit so we can start donating the biggest clothes again. I had already dumped my closet of one size and soon I will be ready to do another dump. I am down about 120lbs. I am feeling proud of my accomplishment. I am over halfway to my goal weight that was recently given to me by my doctor.
I just wish my pain levels would go down, even a little! That first year the stupid doctor who will not be named blamed my weight for my pain, well guess what doc? I’m a lot lighter and I am still in pain. It’s also fall which means the temperatures are going to start dropping and while I welcome the cooler temperatures I remember how my hardware didn’t like the cold last year!
I am working hard in physical therapy to build up my muscles as I continue to lose the weight so I know that I have a healthy body. I am eating healthier, drinking lots of water and taking care of me. Next month we are going to look into doing the genetic testing for blood clots and hopefully find out if I have a genetic disposition for blood clots which several of my doctors and myself believe I do. While that’s not the best thing in the world I would rather know for sure than guess. Having a massive blood clot was one of the scariest moments in my life and I just want to know if that could happen again. Of course just because I have a disorder doesn’t mean it would happen again, it just means there is the possibility. Also knowing we can take different precautions so the likelihood of a repeat is less.
When you have so many major medical problems its about knowledge and prevention. You come to understand that things in life are uncertain and you do your best to prevent what you know could happen. You don’t stop living your life, you just make subtle changes to try and prevent things. I stopped eating high vitamin K foods while I’m on the blood thinners because it makes life easier right now. Once I’m off blood thinners I probably will be more aware of how I eat high vitamin K foods knowing they thicken the blood.
Life is short. This morning we were laughing and giggle and I was thinking about how 3 years ago we were getting ready to be married. Now wifey is stuck with me and has stood by my side through all this stuff. She’s a good egg. I’m blessed. We have a good life. It’s crazy, it’s silly and it’s full of laughs.
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.
How can you still be smiling? How can anyone possibly smile when they are in that much pain? Maybe you aren’t really in as much pain as you say you are! Oh trust and believe I am! When your body is basically breaking down you have two choices stay on the pity pot or jump off and try to make the best of a crappy situation. I choose the latter. Trust me waking up every morning and putting knee braces on is not my first choice. Waking up and putting on knee braces and switching from a soft neck brace to a hard neck brace is REALLY not my first choice right now, but it is my life. I can either suit up and show up or I can hide and be all poor me. Suiting up and showing up means I can see my niece and hear her giggle and see her zoom around the living room in that dress she pulled out of the dress up box. See my nephew giggle as he tries to steal his sister’s cookie while she’s not looking. Suiting up and showing up means I get to spend time with my brother and talk about why worm holes and Dr. Who actually make perfect sense and why the 10th Doctor is better than the 9th.
Suiting up and showing up means that I go to physical therapy and do the stupid squats that I hate to make my legs stronger so that maybe I won’t fall next time. Suiting up and showing up means that I get to have dinner with the whole family and laugh about this or that story that I had forgotten about until someone brought it back up from the family archives. Suiting up and showing up means I hear the prognosis and treatment plan from the specialists even when I wish it was better news. Even when I wanted better results.
I know I joke and laugh and smile more than people might expect, but that’s how I deal with the pain. Just because I’m laughing and smiling doesn’t mean I’m pain free it means that I am trying to do everything I can to fight the pain. I get tired easily; much easier than even I want to admit. I just have to honor my limitations and keep working on what I can fix and accept the things I cannot change at this point. It’s a bitter pill to sallow at my age, but I know things could be worse. I am going to keep on moving upwards and onwards! You have to keep a positive attitude or else all the negative will eat you from the inside. You cannot let all the bad things get to you or you will sit on that pity pot until you no longer exist and who wants that? NOT I! I would rather suit up and show up and enjoy life with limitations than miss out on all the joy life brings me!
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!
Sometimes you just need a redo, I mean the day you just need to climb back into bed and start over. You just want to climb back into bed pull up the covers and try again. That was the day I had today. I have done pretty good with the blood thinner shots, but today I must have had the angle wrong which considering that I can’t look down and I’m having to use the mirror to give myself the shot I think I’m doing pretty well. So I gave myself the shot but it hurt, then after the needle was out it hurt even more. So that was not pleasant. Mother Nature has been giving us temps in the middle to upper 90s with feels like temperatures over 100 degrees so it’s HOT outside.
So I’m pretty sure I am melting like I should have reached my melting point at some point today…and of course I remember that one summer I worked for that theme park and I would be outside in 115 degree weather..yeah that was fun…NOT! So then I decide that maybe I haven’t reached my melting point yet. But I decide to eat a popsicle to cool down just to be on the safe side! Not that I think I need an excuse to eat a popsicle because now that I am an adult I pretty much can eat one whenever I want and I have a valid excuse for eating one. It’s 6am and I’m eating a popsicle because it is orange and I decided to have frozen orange juice with my breakfast…yeah because I’m an adult! See how that works?
So then later in the day I was walking and my leg started to give out on me and I’m thinking to myself see this is the melting point my leg is giving out on me because it’s tired and it’s telling me that it’s giving up on holding up my body weight. It’s going to go on strike and it will not longer participate in fighting gravity on my behalf. I’m sorry body but you are just to heavy and gravity has won this battle…BAM! Body meet your new friend floor, floor meet body where you will be staying until further notice.
I used to watch all those commercials with the old people lying on the floor and they would say “I’ve fallen and I can’t get up” and you would think aww poor old people they are so fragile! How is it at 30-something years old I could be in one of those commercials? When did I become so fragile that I could be an actress in that commercial and lying on the floor telling the world I can’t get up and really mean it?
The issue would be the people watching at home would be like that chick is too young for this commercial! That can’t be right! Fire the casting director! These are supposed to be OLD people, she doesn’t even have grey hair! The issue is that I am clumsy enough for the commercial!
There was a really interesting discussion yesterday in one of my doctor’s offices between myself, another patient, the doctor and one of the techs, the topic at hand…opioid pain medication. So both the other patient and I have long histories of pain but neither of us are on opioid pain medications. I know that had I stayed on pain medications I probably would be addicted at this point. My first back surgery was September 2014 and my back still is not fused.
We talked about how we have created an epidemic because doctors in the past have been too quick to prescribe the opioid pain medications and not try other ways of pain management. There are other things to try for a lot of patients. Now there are patients who do need pain medication for longer term use, but those patients are few and far between. A lot of patients who are on opioid pain medication don’t need them for long term use.
I will ALSO say that just because a patient is on opioid pain medication does not make them an addict. There are plenty of patients who are under doctor’s care and they are taking the medication responsibly and there are no issues. I know patients who need the heavier pain medications and they have tried other methods of pain management to no avail.
Apparently I lost my mind for a moment this morning…now it could have been that my body decided that 5:30am was a good time to wake up and my brain wanted to sleep later. I did try to stay in bed later, but the longer I fought my body the more my pain increased and I soon realized this was a losing battle. So body 1-brain-0. So I got up threw on my walking clothes figuring if I was going to be up so early I would get my walk in early, then get breakfast and a shower. Sounds like a plan right? So I get the socks on, put the shoes on stand up and CRACK! BOTH KNEES CRACK like the old wooden staircase in some creepy old house you shouldn’t be playing in as a kid. I close my eyes and softly shake my head…knee braces…still sitting on the FLOOR…
Remember what I said about body-1 brain-0 WELL apparently when my body won the argument to get up, my brain still tried to sleep in because now I have my shoes tied and my knee braces are sitting on the floor beside me. Of course I now have to untie said shoes to take them off and put the knee braces on in order to walk, but what else is knew? I think I need some coffee…
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.
So it’s summer and it’s HOT! What happens when you are hot? YOU SWEAT! Oh yeah it’s basic biology people! So now I am wearing neoprene braces on both legs so they sweat even more, which means they need to be washed regularly, makes sense. So last night I washed said neoprene braces. This morning I have a medical appointment which is pretty par for the course with the upcoming surgery and THEY AREN’T DRY…..ummm oops? You see what else happens when its summer and HOT like really HOT is we get random thunderstorms at night. I did not calculate this into my drying time NEEDS of said braces….
So the braces are currently laying on a towel in front of a fan hoping they dry out before I have to put the hinges back in and wear them or else I am going to have to put on wet braces which will be kind of gross….the one brace was almost dry this morning when I checked it the other one is heavier and NOT SO MUCH….. yeah…..I just imagine wet bathing suit feeling but on my knees…
So we’ll see when it’s time to bounce out of here if they are dry or not and I have learned a valuable lesson! There is some wise quote out there about experience being the best teacher or something like that… I guess now I have the experience of when its really hot outside and there are thunderstorms and I have a morning medical appointment I might want to re-think washing my braces the night before. However knowing me and knowing my memory problems you probably will see a similar blog about this same problem sometime in the future and you will think didn’t she already do this once before? And go back and look and then laugh and think didn’t she have déjá vu? The answer is probably NO just to clear that up now.
I will say that walking around this morning sans braces is odd and a bit scary because I have gotten so used to having them on first thing in the morning that my legs have almost forgotten how to walk around for long periods of time without them, which is odd since at physical therapy I don’t wear the braces. However I am home so I guess my brain knows that they should be on, so I feel out of sorts. My knees definitely feel naked!