You’re sitting in the doctor’s office and you get a new diagnosis..what is the first thing that pops in your head?
d) I’m switching Doctors
The thing about having a chronic illness is that often e is the one that pops in your head! You’ve been to the doctor so many times, they have run multiple tests and when you FINALLY get a diagnosis you want to jump up and down and scream and shout! However usually by the time that happens you don’t have the energy to jump up and down or scream and shout! This year alone I have had multiple new diagnoses, some I was happy about, some not so much and I might be getting a couple more by the end of this week…yeah not sure what my response will be.
I am tired right now. I am so exhausted from everything that is going on that I am in survival mode. I am falling asleep at night on the computer in mid-typing which is the clue I need to hang it up and go to bed. I know part of the issue is the heat, it is HOT where I live right now and so being out in the heat is not helping, I have had a lot of medical appointments getting everything ready for the upcoming surgery, but the other part of this is just ME! It takes a lot of energy to do everything. When I walk I have to be aware of my foot placement because my right foot likes to drift and then that puts added pressure on both knees, which I don’t need. So I have to be careful of how I am walking. My left ankle has been sore which I can’t figure out if I just stepped funny at some point in the last week and didn’t realize it, or if something else is going on.
I have really bad balance issues so I am always having to be aware of my surroundings to make sure I don’t bump into something. I don’t want to knock anything over because I am closer than I think I am, which happens. I have been having headaches because of the weather, and my allergies have been acting up as well. So things are just all sorts of complicated right now and I have to work hard at keeping them uncomplicated. That takes a lot of physical and mental energy. Add the fibromyalgia in the mix and I’m done!
Sunday I was walking out of the bathroom at church…this should have been an easy task…but it’s a narrow bathroom. I did not walk to the handicapped bathroom. I lost my balance and my knee brace got caught on the cabinet. Wifey asked me if I was alright and I assured her I was, and I was it was more embarrassing than anything else. I sat down and fixed my knee brace. I wanted to make sure that when it got caught it didn’t get twisted.
I just like to make life interesting for everyone around me! I like to keep everyone guessing! I will be glad to have the rest time after surgery! Right now I feel too busy which I know that will slow down to a halt very soon and I will have time to breathe again!
Death. It’s not sexy. It’s not funny. No one wants to talk about it. We hide from it. We want to be old and grey. We want to avoid death as long as possible. I get it. We scream and wail when someone young dies. We think why did that happen to them? Why so young! It wasn’t fair! It shouldn’t have happen to them!
My sister died young, she was in a car accident and suffered a lot of injuries and significant brain injuries that we didn’t know about for 2 weeks. We had to remove life support. I would never wish that on anybody. While we as the family knew it was the right choice to remove life support it was still a hard action.
So last year I came close to losing my own life when I developed a saddle pulmonary embolism. I was told over and over again that I should be dead. How lucky I was to be alive. Trust me I know, I’ve now seen the scans (and I think I’m grateful that I didn’t see them until the clots were 100% resolved!!!)
So I have another surgery coming up and everyone is worried about blood clots again (I’m not, but I do understand that I am at high risk). So I told the wifey that I need to fill out the Advance Directive paperwork and sign it and then file it with the hospital before the surgery this year. I am feeling confident that everything will go smoothly. So you are probably thinking so why is she filling out and filing the paperwork?? Last year we came to close to crossing that bridge. I want to sit down and have that paperwork filled out. I want to sit down and discuss with the wifey how long should she keep me on life support. How long should she do this, how long do I want that. How far do I expect her to go to keep me alive. As a couple we have talked about a LOT of things and this is something we have skirted around.
Filling out the paperwork so they have it, so it’s clear what I want is important. I don’t want her to have to guess. I also don’t want her to have to feel like she has to make all those decisions alone. If we sit and I fill out the forms and we discuss all this now she knows how I feel. I realized that I know what she wants if she dies, but I don’t know where I want to be buried, if I want to be buried. Do I want to be cremated? I never really thought about it! Last year I came too close for comfort to the end, I have no plans on getting that close again! I just want to write out my wishes for my family so they know.
When you have a chronic illness stress takes on a life of its own sometimes. It’s not just your stress either- your family members also get stressed. My wife is the most wonderful woman in the world, but I know everyday that my chronic illnesses stress her out. I know my disability stresses her out. We don’t have a normal life because of my chronic illness and disabilities. We try to have as much of a normal life as possible, but everything we do we have to think about logistics. I have a physical disability and while I get around pretty well, stairs can be an issues, steep hills are definitely an issue, and walking long distances is an issue. So we have to think about where we are going how long we are going to be there, will I be able to sit and rest at some point, etc.
It’s always the elephant in the room. Now I’ve been told that I have to wear these knee braces because my knees will not get any better, they will get worse over time how much time is anybody’s guess. I am staying in physical therapy to try and strengthen my knees and legs to hold off more damage, but so often I am not doing anything more than walking across a flat surface and one gives out on me.
Right before every surgery I get more stressed out because I want everything to go as smoothly as possible so I try to make sure everything is perfect. Yes I know this is an unrealistic ideal, but I am at heart a perfectionist and while I am working on letting go and I have made big strides I am a work in progress. So we are getting ready for surgery later in the summer and I am stressing. I am not stressing about the surgery itself. I know that is going to be fine and honestly once I am at the hospital the morning of the surgery I will be calm. It’s all the days BEFORE!
I’m trying to make the last minute doctors appointments to see this specialist and that one. Trying to make sure that these ducks are in a row. Trying to make sure all my medical team are in the loop with what is going to be happening so no one is surprised when I walk into appointments after surgery with a neck collar on. I think I just have one more of those appointments now. I have other appointments, but I think everyone is in the loop!
I am really working hard to try and find some zen and before the surgeries and back problems I did yoga, I swam, I hiked (yes I hiked!), but those just aren’t feasible right now. I am hoping that once everything is fused in my low back that I might be able to do some yoga again that is safe for back health. I really miss yoga. I am working on doing some daily meditations again because I think that is part of the reason I am stressing so much right now is that I don’t have any zen in my life.
Oh my GOSH is my heart broken for all the families and friends dealing with losses in Orlando right now! Such a senseless tragedy and violence against the LGBTQ community. There is so much hate in this world it really makes me sad. Wifey and I have been discussing it a lot, praying for all the families since we heard about it. Our hearts break for everyone who has lost a family member, partner, wife, husband or friend in this attack. The list of the victims was released this morning by police. So many young lives lost.
I watched an interview with a Mom who got a text from her son who was killed in the women’s bathroom. The first text he sent her was I love you Mommy, and then begged her to call the police.
There are no guarantees in life. I almost died from a blood clot last year, my sister did die in a car accident. You never know walking out your front door if you will return. I say this all the time that it’s really important to tell people how much they mean to you, how important they are to you. I really feel it’s important to live life. There really does need to be more love in this world because there sure is a lot of hate. I was looking at a map of the United States and the recent mass shootings and it made me sick to my stomach. There is so much hate in this world.
I see the tweets and the comments from our leaders and even some of those are filled with hate. Anywhere you turn you still see it. You can still feel it. It just makes me sad to see how much hate there is in our world. We need so much MORE LOVE!
So we had over 4 inches of rain fall this month! CRAZY! I hope the gardens everywhere are SOAKING IT UP! I mean I want lots of fresh veggies at the local farmer’s markets, because someone should be benefiting from all this rain, rain and yeah MORE rain! The wifey planted a small garden for us and she has a few more plants to get in, but all this rain has made that a bit of a difficult task!
My knees have been rather swollen, I noticed last night they were about twice their normal size, they still have a nice click, click, click, if I was Dorthy I wouldn’t have to click my heels, my knees should do it! I could just close my eyes and bend my knees “There’s no place like home, there’s no place like home!”
I really am over being sore. I had to turn the spinal cord stimulator off for a bit earlier to give my stomach muscles a break. I have had my stimulator turned up higher than normal because I am in more pain, so my stomach muscles can feel the buzzing which normally they don’t. So I can only take that for so long and then I have to give them a break.
I do like the stimulator and I am glad that I have it, if only it covered my WHOLE back I would really be in business! I mean my upper back and lower back I wouldn’t complain. Actually they are working on a wireless one that can be put in to do other regions and I do believe they will be able to do neurocord stimulator all over the body in the next few years. So who knows maybe in the next 10 years I will have the ability to have it over my whole back….
For now I am going to enjoy the coverage on my low back and legs. Try to cover up the really annoying nerve pain in my feet and enjoy life because life is too short!
I really like butterflies. So yesterday after we got my hair cut which it needed to be cut, we went into retail chain shop that has a bit of everything. You can buy everything from food to furniture. So first thing I made sure to do was turn my back on which Mom asked me if I was okay to walk in the store and I told her I was because I’ve learned I gotta turn my back on for prevention. If I turn my back on I will last longer. If I try to turn my back on once it starts hurting its not as effective. Learning how to work with my body verses against it has been giving me a better quality of life, now if we could just get my body to work with me we would be cooking with Crisco® as the saying goes!
So this is my favorite time of year to find items with butterflies on them because it’s spring so all sorts of home decor comes out with butterflies! So yesterday we found a new sign for the kitchen that says “Welcome to Jennifer’s Kitchen” with butterflies, and these butterflies that have LEDs in them that you stick to the window and they light up! I was all giddy! I seriously act like a 4 year old some times! So last night I light one up on the window and I am putting dinner away and I seriously turn and think WHAT IS FLASHING IN THE WINDOW!!!!! Then I calm down and realize..it’s just my new butterfly! I start laughing and wifey looks at me and goes what are you laughing about? So I admit to my butterflies freaking me out and she laughs and shakes her head at me. Hey, at least I can admit that I freaked myself out!
We also got a new shepard’s hook that has a butterfly on it for outside that I am excited about too because hey the more butterflies the better! They bring me so much joy. I am looking forward to the warm weather, the garden that wifey plants and fresh food from the farmer’s market (and our garden of course!). The warmer weather will also hopefully mean less pain days, but time will tell!
So apparently people will make what used to be called a “sandwich” and call it homemade Subway now. Yes people this is a thing now…yes I am being totally serious. So wifey and I were discussing this this morning before she left for work as she was showing me pictures on Buzzfeed and then tonight we were still laughing about other homemade restaurant foods. Now I want to point out that any sandwich is classified as Homemade Subway including those made on plain white bread, not just those made on sub rolls..to which I was VERY CONFUSED!!! I mean if you are going to be calling it homemade Subway I would think only sandwiches that you can actually buy AT SUBWAY would count, but apparently this is NOT the case. So wifey was talking about I’m going to make some spaghetti and make me some Homemade Olive Garden, or some tacos and have some Homemade Taco Bell. I mean why not?
So then she showed me a picture of a Drag Queen and said that some Drag Queens can pull off a trashy look, some cannot. In the picture the Drag Queen looked like Amy Winehouse, so me being silly go “Why haven’t we heard any new music from Amy Winehouse??” Of course I start giggling while I say this which totally gives up that I’m being serious in my posing of the question, but eh I tried! We really have lost some really great musicians too early.
So tomorrow I am thinking I am going to make some Homemade Subway for lunch I mean since apparently you can use any bread and any toppings I figure I can use whatever I find and it will count! I mean I could put hot fudge syrup on their but as long as it’s between two pieces of bread it counts as Homemade Subway.