Monthly Archives: July 2016

Shoes and braces….

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…

Gingersnap

Oh Potassium….

For those of you who have been on this journey with me for awhile you know I have this waltz with potassium. For anyone just joining welcome and let me give you an abbreviated version of the story…. Last year right before my 2nd & 3rd spinal surgeries I had my routine blood work done and it was found that my Potassium level was a little low, so they put me on potassium supplements. Then I had a saddle pulmonary embolism (massive blood clot both sides of my lungs), to which I was apparently supposed to die, but I refused..well I’m stubborn like that…to which I continued to battle with the Potassium for months until they stopped one of my medications in hopes that my Potassium would return to normal. I got a good reading and all was SUPPOSED TO BE RIGHT IN THE KINGDOM!!!!

Fast forward to yesterday…..I had to have more routine blood work done for my upcoming surgery (do we sense a theme here?) and I got to see the results this morning and I’m looking at all the results and everything is looking good some stuff is a little on the low side of normal, some on the higher side of normal, but all NORMAL so I’m like good, good, good..and THEN….I get to the line that says POTASSIUM….I think it’s going to become a curse word in my vocabulary. I mean seriously…. it’s LOW. REALLY???!!!!

So I suppose I get to take supplements again until time of surgery…BLAH…however this also just proves my point that I didn’t think it was the medication necessarily lowering my Potassium levels, I thought it was something else. However I don’t have an MD behind my name! After all is said and done I feel like I could pass my medical boards however! (Trust me that is said very tongue in cheek). If Potassium was a tangible thing and we were in the wild, wild west I would be meeting it at high noon!

Luckily I know it’s no big deal and I’ll just have to take supplements and they’ll draw the blood right before surgery and all is well. It does annoy me however because it’s been this on going battle to get the Potassium to STAY UP.

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Attitude of Gratitude

Attitude of Gratitude can go a LONG way when you are dealing with a lot of health problems. Heck it can go a LOONG way when you aren’t dealing with a lot of health problems! So earlier this month we got repeat xrays on my back which at this point I think I could do in my sleep because I’ve had them done so many times the tech rarely has to re-position me, I usually know exactly how she/he needs me! I was frustrated when I saw the report that said no significant change since January (Healing SLOOOWLY). I saw one of my doctors who has been helping specifically with my back recovery this week and he confirmed that the fusion is happening but at a snails’ pace… he also confirmed that there has been little progress between January and present. He also showed me some other areas of concern on the xray, which were not new areas, and I teased back that one area in particular I was complaining about to him which is why we had recently changed focus in the treatment plan.

So what does this mean? A) I do know what my body is going through because I can feel it. The one issue I had complained about which is why we did the xrays in the first place and the xrays showed exactly what I have been feeling. B) We are going to have to keep doing the xrays to watch for metal fatigue because right now a few pieces of metal is what is holding my spine together (yeah let that sink in for a minute…) C) We continue with the physical therapy and D) Keep up with the supplements.

Mentally what does this mean? ATTITUDE OF GRATITUDE! I could be on here whining about how life sucks and I should have never done the surgery and I was better off before, blah blah blah but I honestly don’t believe that. The leg spasms have decreased, I have lost a bunch of weight since I had surgery (the surgeries really gave me the motivation to start losing the weight and then keep it off), and I do believe that I will get better in time. I have an amazing team of doctors. I was talking with one doctor about the upcoming surgery and he said something about that my back hadn’t fused. I said if I had lost my faith in the surgeon I wouldn’t be allowing him to perform the next one, but I haven’t! I have total faith in the surgeon. The surgeon has done everything possible to set me up for perfect fusion, my body has just been SLOOOOOOOW to recover!

So I am going to keep on trucking, keep moving forward and keep looking at all the things I have in life to be grateful for, because at the end of the day…THERE ARE A LOT!!!

CPAP Backtalk?

So over the years as technology has improved so have CPAP machines. When I first went on CPAP the machine was pretty basic, apparently the information could be uploaded but they had to attach it to a telephone wire and it was a huge pain and unless the doctor really wanted it… NOW the information is put on a SD card and the report is really detailed. So if the doctor needs the report you pull the SD card out, take it to the company that supplies your machine they print it off and there you go!

So I haven’t been sleeping well and I can check in the morning the average number have apneas I had the night before and the goal is ZERO. So on the number I am on we got it down to zero and before usually when I checked I was at zero, 0.1, or 0.2 which was good. I was sleeping 7.5 hours-8 hours a night life was golden….NOW I am somewhere between zero and 1.0 which is NOT GOOD, and I am sleeping anywhere between 6 and 7.5 hours. So yeah.. doctor wants the report to see if he can figure out what is going on.

Possibility is that my pain is just too high and that is causing me not to sleep well because I’m broken and between the knees, back and neck I just can’t get into a good sleeping position. The other possibility is that I need the settings on my machine adjusted again due to my weight loss. So weight plays a role in your settings I was at one setting, then I gained weight and I needed a different setting. Well now I’ve lost 100lbs so it’s possible that I need my settings adjusted again. So we’ll see what the report says.

Of course with surgery being so close nothing is going to be done until after surgery and I am recovered a bit. So we might be doing another sleep study after I am healed from that. We just are going to wait and see. I love being the patient everyone scratches their head over.

I have worked really hard to create good sleep habits for myself because of my sleep issues and I wear my cpap every night because I know overall I feel better when its on verses when its off, and hopefully we can get this figured out!

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.

High pain + Disappointment

So I have been quiet at least on here, I am in a high pain period. I am trying to get stuff done before my surgery which means a lot of doctor appointments. Everyone has to sign off that I am cleared to have surgery. Lots of boxes to be checked. I am also finding that my arms are going numb a lot more often which is frustrating, but then I also have validation that I need the surgery. I know the time is right.

Today I have pain from the base of my skull down the right side. The nerve must be slightly pinched. I keep rubbing it gently hoping it will feel better. I got the packet about the upcoming surgery and it says you can’t take over the counter pain killers for 3 months or until your fusion is complete which brings me to my disappointment…

So I got x-rays done a couple weeks ago on my back. The last set were done in January and it showed that my back was still not fused, but there was some signs of fusion just not a lot. I just got the x-ray report and it says there has been no change since January. Which is a huge disappointment because we really thought that with the hardware my back would fuse. This also makes me wonder WHY isn’t my back fusing. I mean it’s been 22 months since the first surgery, it’s been 10 months since the hardware was put in, but no fusion yet. It is frustrating to say the least. So I’ll take the images to the doctor to find out his opinion on things, ask some questions and see where we go from here.

I do know that no matter what ALL IS WELL! Even with this disappointment I am well.

High Fiber Foods + Coumadin = A Delicate Balance

I am obese. I have been working on losing weight since 2014. I found a high fiber meal plan/lifestyle that I LOVE. I have been very successful at losing the weight on said meal plan, THEN comes deadly blood clot in October 2015!!!! *Que super dramatic music* So it’s been a bit of a struggle losing weight since October. I am going to be really honest because a lot of the foods that I got really accustomed to eating like spinach, kale, spring mixed salads ALLL are high Vitamin K foods that you have to really watch when you take Coumadin.

So let me explain a little bit about how they get rid of blood clots, so the body will naturally get rid of a blood clot by breaking it down. Sometimes doctors will try and break up a blood clot, but in my case they felt like trying to break up my massive blood clot would kill me, or cause me to stroke so they decided that giving me blood thinners and seeing if my body could naturally break up the clot would be the safest choice. So they put me on Coumadin which is rat poison. Yes, I am not kidding you, scientist found that by giving rats Coumadin it thinned their blood until they bled out, hence why you have to have regular blood checks to make sure your blood is not too thin!

Vitamin K and Coumadin are enemies (of sorts) because Vitamin K reverses the effects of Coumadin! Which is why you have to watch what foods you are eating that are high in Vitamin K to make sure you are not accidentally making your blood too thick again. For every patient depending on condition there are two basic ranges for INR (International Normalized Ratio) 2.0-3.0 or 2.5-3.5. Now some people might have a bit different based on their own medical needs but those are the two most common ranges.

So I get this massive blood clot and I’m told to stop eating Vitamin K foods until we can get my INR up, so I have to stop eating broccoli, spinach, kale, spring mix, brussel sprouts, greens (collard, turnip, mustard), and many other green foods that I had been packing my diet with! So I also know now that those foods thicken your blood naturally (just saying!) So how am I going to keep up my high fiber diet without eating those foods?

So there are LOTS of other sources of high fiber like beans, fruits, OTHER veggies! So I started looking at foods like sweet potatoes, beans (I eat a lot of beans now!), fruits (in moderation because of their higher sugar content), and because we are gluten free I eat quinoa. So it is still possible to eat a high fiber diet when you are on blood thinners, you just have to get a bit creative at times! I will also do things like add peppers to quinoa and beans (think rice and beans but quinoa has more fiber than rice!). Add some extra fiber to foods by adding in more vegetables to what you are making, adding in white beans to dishes a lot of times works because white beans will soak up the flavor of whatever you are cooking. I am really happy its summer again because there are lots of fresh foods at the local Farmer’s Markets! What’s better than going and helping out the local farmers?

So next time you are making your favorite dish think about ways you could add a bit more fiber to it, you might be surprised what you come up with!

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!

HEAT

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.