So cardiology check, lung check, finger prick, I mean I feel like we should all be singing head, shoulder, knees and toes…knees and toes……
Seriously! Don’t have surgery! No…if you need surgery like I do, HAVE SURGERY! Just don’t have surgery if you don’t need it because it’s a pain in the butt all the appointments you need! Well the first time I didn’t need so many appointments, it’s just now that I’m so broken I need this many! I am me healthy as we put it now!
At least everything is checking out and I am still cleared for surgery, which is always good when you are this close to surgery the last thing you need is to be told you have an issue. So we are running full steam AHEAD!
I am staying on top of everything to make sure everyone is on the same page which is always my LEAST favorite thing to do, I hate playing the train conductor, but so often have to because I am beautifully…COMPLICATED! So many trains, so many stations and trying to get everything organized and keep everything on time!
I will be glad when surgery is done and I can spend some time resting! I doubt I will rest a lot, but a girl can dream right?
So this is going to be a LONG week for me of appointments which I dislike because I prefer to have down time when I can. In the shower I was thinking about my week and the appointments, I couldn’t remember one. I’m thinking and thinking and it just wouldn’t come to me and it’s frustrating because I KNOW I HAVE ONE MORE! So I get out of the shower, get dressed the whole nine yards and look at my phone and it’s DUH!
So the answer becomes what do you do when you are sick/have a chronic illness/multiple chronic illnesses and have a busy week? REST WHEN YOU CAN! I have been taking a nap every chance I can get! Yesterday I took a 2 hour nap and it was GLORIOUS! I think the wifey was surprised because I have not taken a long nap like that in quite some time, but hey I was dead to the world sleeping and enjoying it, so I SLEPT! I have also been making sure to go to bed on time, waking up when my body wakes up which internal clock and I are on the outs…5:30am is way to early, but that’s what I am getting right now…and making sure to do my allowed amount of exercise daily. I am doing my physical therapy exercises as well.
We have switched from the knees to the back so I am incorporating the back exercises back into my routine more often too (I never stopped doing the core/back exercises, but now they are getting done more frequently again). Still working on the knees. Life is good. I am also doing my morning devotion, making sure to take some time out each moment to try and quiet myself which is hard right now because I am so busy.
Sometimes it’s hard to just take a moment and remember to just breathe. Just relax and be in the moment. Shut out everything that is going on. It’s good. Take just a moment and breathe. Take just a moment for yourself. You can do this, you are worth it. Just a few minutes each moment.
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.
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!!!
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!
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!
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.