Tag Archives: family

Hey sexy I like your neck collar!

So I’ve heard a lot of pick up lines in my life time, but today’s took the cake. So I was with my Mom and we had stopped by the grocery store to get my Dad a organic yogurt that only 2 grocery stores in the area sell, so we had walked through and picked up a few other items. I promised the doctors that I would be up and active after surgery so we wouldn’t have a blood clot so today I would walk a bit and then rest, walk a bit and then rest you get the picture. So we were checking out and I kid you not the checker tried to use my neck brace as a pick up line…..

Guy- So how long do you have to wear your collar?

Me- Oh I don’t know yet.

Guy-When did you have to start wearing it?

Me- I just had neck fusion surgery last Wednesday and if my back was any indication I’ll be in it for awhile…my back was fused 2 times once in 2014, then in 2015 and it’s still not fused.

Guy-WOW! Yeah I had to wear one of those collars for a class I was taking and we had to wear it for the whole class period and it was really annoying! You have to turn your whole body when you move, and he starts demonstrating for me (as if I don’t have first hand knowledge here….)

Me- Yeah it gets to be a real pain when you are trying to look down and you remember you can’t!

Guy- I bet! I don’t know how you have been able to keep that one on the whole time, did they at least give you a soft one too?

Me- Yeah I have a soft one to sleep in

Guy- That’s good I would hate to think you were trapped in that hard one all the time, at least you can switch between the two!

Me- Yeah, it helps

Guy-I hope the next time I see you, you are free of the collar, or at least in less pain. But no matter what I hope I see you the next time you come in!

 

Yeah there is friendly and then there is I want your number and trust me with the body language this guy was I want your number! Too bad he’s not my type! #Prettysuremywifecouldtakeyou!

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New Diagnosis?

You’re sitting in the doctor’s office and you get a new diagnosis..what is the first thing that pops in your head?

a) WHAT?

b) NO!

c) IMPOSSIBLE

d) I’m switching Doctors

e) HALLELUJAH!

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!

 

Chicken…head…definitely cut off!

OH MY GOODNESS!!! So yeah… surgery is FAST approaching, so I pretty much am on the run (okay walk but you know it’s the saying here)! I have at least one if not two appointments a day right now as we get things ready for surgery. I am working fast and furious getting the last few details down before surgery number 4.

There have been some anxious moments like when my paperwork packet didn’t show up on time, so we thought it was lost in the mail. No it showed up..just two weeks late! I had the doctor’s office fax it to me. I got my physical, I’ve been having more evaluations done on my physical and mental health right now. The neurological symptoms have been better and worse all at the same time, so we are looking to get more of a baseline right now. So I am doing some testing there. They also want to make sure that I am fully recovered from that concussion I suffered from last year. I had some testing about my physical abilities to see where I have made improvements there before I have surgery again to get a baseline before I get more anesthesia. The moral of that was I have awful balance and I sway. I also snap, crackle and pop A LOT.

So I am a lot high strung, I was going to write a little and then realized I should not lie. I am very high strung right now and it’s hard to deal with and I used to be on medication to help bring me down a notch or two, but they stopped that in January and I think my family is missing it right about NOW! Sometimes it’s better to be on medication than without it, but once they finish the testing the doctor is going to prescribe me something again, but we want to wait until testing is done.

58 ounces of liquid…..

So if you have read about my pets you know that I own a cat. A very special rescue cat, but a cat….so let me back up for a moment to let you know that I am sleep deprived today (this will be important in a moment). I went to bed around 11pm, I was up briefly at 1:30am to hear about how wifey was having trouble sleeping, then I got up at 5:30am which has been the norm this week (more on the internal clock saga LATER). So back to Creme the cat…so Creme likes to chew on plastic she doesn’t eat the plastic just chew on it (which yes I know isn’t healthy and trust me when I tell you we have been trying to correct this behavior for years now), so she’s sitting beside me and there is a plastic bag also sitting on the loveseat and she is chewing on it. I tell her to stop, she stops temporarily, and then as soon as she thinks I’m not paying attention she tries again. So I think I will go feed her early, normally I don’t feed her until 7am, but since she is chewing on the plastic maybe this will encourage her to stop.

THIS WAS MY MISTAKE! Remember I am sleep deprived…I have not had my cup of coffee yet. I have had breakfast I have make it that far in the morning routine, the coffee is made, but I have not made it back into the kitchen to pour a cup of coffee. So I pour too much food into her bowl because I am sleep deprived and overshot how much to pour in the bowl, then walking out out I trip over her water bowl. So we have one of those self-water type of bowls for her that holds like 50oz of liquid..it flips over on its side (of course), I stumble like a drunk out of the bar at 2:30am. I try to regain my balance without dislocating something and/or breaking something, turn around slowly and put her water bowl upright again but not before 48oz of water has now poured on the floor. All I can think is how fast does that thing empty? I mean it was on the floor for like 30 seconds??!!! I know I’m slow but GEEZ!

So now I am getting a towel to clean up the water that I have no gloriously poured all over the floor. I am carefully cleaning that up, Creme of course is just looking at me like that was MY WATER how DARE YOU! Oh give it a rest cat! You prefer fresh water! I tried to give her my best teacher face to make her go away, but it didn’t work. So as I am cleaning it up I swear the water is multiplying, and growing and becoming a bigger puddle, so the first towel is now drenched, so I get a second towel and that towel is now drenched and I’m thinking if I don’t get it cleaned up with a 3rd towel I’m calling Mary Poppins! I mean it was just her water bowl and I’m pretty sure there shouldn’t be this much water from one little bowl!

I also think Creme was secretly laughing at me because of everything. I wouldn’t be surprised they say that cats take after their owners and wifey laughs at me all the time! So I FINALLY get all the water cleaned up after what feels like Noah’s flood! So then I know I need to get a cup of coffee to not pass go do not collect $200! So I get my cup, I start to pour the cup of coffee and I miss and pour it on my shirt….WOW! Did I mention that I am sleep deprived today? So I try again a little more carefully and I made it IN the cup this go round. So now I am working on drinking my coffee but I promise a nap is in my future!

Advance Directive

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.

100lbs down, and I can’t believe it!

I am officially down 100lbs right now and I really can’t believe it. I have been working really hard and slow and steady I have been losing weight slow and steady. It has not been easy with all the other health issues. If you had told me 2 years ago that I would be able to lose this much weight I would have doubled over laughing in ¬†your face! I would not have believe it..AT ALL! Of course if you had told me about the myriad of health issues I think I would have raised an eyebrow too, but that’s another story! I mean not many people get a second chance at life.

So I had told myself I was going to get down by the end of June, and I did it! I was about ready to jump up and down on the scale. Which I don’t suggest because a) it’s bad for the scale and b) I can’t because of my knees! I was so happy. I want to continue to lose the weight a little at a time because I know it will be better for my overall health. Going into this next surgery I know being at least 30lbs lighter is going to be a lot better for me. I’m hoping to be 40lbs lighter, we will see!

Take life one day at a time.

Stress

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.