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!
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 I got my tests results and they were positive results. The Nuclear Stress Test matched the 2 previous ones so that is a positive in my world. Matching is good. I felt like saying Tic-Tac-Toe three in a row! The echocardiogram was good too! The heart is going back to normal size, not quite back to normal size, but getting there. Doctor wants to see me back in July so I’ll see him right before my neck surgery. He did give me a letter to give my neurosurgeon to tell him that from a cardiac standpoint I am good to go.
As far as the blood thinners he says I can come off of them, but suggests I go on a low dose aspirin to keep the blood thin to try and prevent another clot from forming. He and I also discussed that I am at a really high risk for developing another clot after this next surgery which I know. This is nothing new, BUT I cannot be afraid of it either. The moral of the story is I could develop another blood clot at any time. I am educated now, I know the signs now. I am much better versed in what to look for which is good.
So doctor has been having me take 2 potassium pills to try and raise my potassium level up, but it didn’t work, so now I’m going to take 3 potassium pills for the next week. I’m not sure what the plan will be if 3 pills don’t work. I still want to know why my potassium is low with taking the supplements. I get that the doc thinks its the blood pressure meds, but I’m not convinced. I really think it’s something else. I think this little experiment will be good because if he raises it to 3 and the potassium doesn’t budge I’m going to say to him okay what else could it be because you’ve tripled the potassium and my level is staying the same something is going on!
The weather was nice and pretty and then it got COLD! I don’t want it to be cold, I’m done with cold. I want nice and pretty! I like nice and pretty! Wifey is going to be planting the garden soon, I’m excited! Life is good. Pain levels are high due to the changing weather patterns, stimulator is on more often than its not, but I try to make the best of it. My hips are misaligned again and I’m leaning to the right, so I’m trying to be mindful and stand up straight, but it’s hard when I’m tired I fall into old habits. Plus just being stiff from everything else. But I’m upright, so that’s a plus!
I am having one of those days I expect to find my cellphone in the fridge..yup I just don’t know which end is up. I mean I keep walking into a room and then stop to think why was I walking in here in the first place…I know this is just the fibromyalgia, but geez! Brain fog is something I still have not gotten used to which I’m not sure you are supposed to, I mean I know it is part of the condition, but forgetting why you go into a room should just be a side effect of old age. I’m too young for this!
I have not been sleeping well which might be the fibromyalgia, might be my sleep conditions, might be the back issues, might be my neck, etc I have so much going on right now that it’s hard to say why I’m not sleeping, but it’s getting old. I really want to sleep more, but then I look on the cpap machine and realize I’m back to my 7.5 hours. I used to consistently get 7.5 hours, and then I was getting a little more and it was awesome, now I’m back to 7.5 hours.
So the heart rate is going up and down and I am feeling like I’m on a really bad ride that I don’t want to be on. Can someone please tell my heart that what ever carnival ride it put me on, I didn’t buy the ticket? I like the lazy river ride please not the shake them up and let them loose one! When I was a child we went to the fair and they put me on one of those rides that they spin you around and you go around in a circle I started turning green so they stopped the ride so I could get off! They knew I needed to get off before I puked!
The joys of the neurological issues is that I feel carsick all the time so that plus the dizziness from the heart issues is NOT FUN! I want a refund on this carnival I want the fun one! Next time I’m picking the field trip! I want to have fun not feel like I am going to fall over at every turn.
The waiting game is something I still haven’t gotten totally used to, am I better at it? Yes, but it still sucks. I am a lot better at waiting for my appointments, but waiting for test results that’s where I have anxiety still. The nuclear stress test from a couple weeks ago and the echocardiogram results I will get in a few days, but I don’t want to wait a few more days. I can wait a few more days, but I don’t want to wait. I just want to know what is going on now.
After I hurt my back I feel like I live in this world of the other other shoes dropping all the time. I’ve gotten to the point where I just laugh when I get bad news. I think some of my doctors think I’ve lost it sometimes, but I think of it more that I’ve learned to roll with the punches. I remember one day I went into my doctor’s office and my blood pressure was high and he said I think it’s only high because you are too anxious, you have been getting so much bad news that you are just waiting for me to give you more. I looked at him and go are you giving me more bad news today doc? And he goes yes, BUT….and gave me bad news, but it wasn’t as bad as some of the news I had received in the recent weeks. It’s like its all relative. So now I just laugh when I get bad news. I figure if I take it with a better attitude the easier it will be to deal with, that as been another life lesson.
When you live in a world where you are constantly in doctor’s offices you meet a lot of people. Some people have more medical problems than you do, but sometimes you take the cake. The hard days are when you are the one with the most medical problems. I get a lot of stares because I am so young and have so many problems. People expect me to be older, but I can’t help that. So I used my sense of humor to get me through the worse of it.
I also read the Bible a lot. I’ve always been one to read the Bible. It brings me comfort. I have certain passages highlighted in my favorite Bible because they bring me the most comfort, or they are highlighted to remind me in times of trouble hey read me. Look here this is your answer. I remember hearing the doctor telling me “You should be dead, I don’t know how you are alive.” All I could think at the time was “God.” I mean seriously that’s how I am alive. If God wanted me dead, I would be dead. God wants me alive, so I am alive. 1 Peter 5:7 “Cast all your anxiety on him, because he cares for you.” That’s what I need to remember right now. Whatever is going on with my heart rate I need to let go and let God.
Today is the repeat echocardiogram to find out if my heart is still enlarged from when I had the saddle pulmonary embolism in October 2015. It’s hard to believe that I am coming up on six month already. My life is a lot different now than it was six months ago, I mean right after the blood clot I felt like I had just cheated death and I think I still looked over my shoulder on a regular basis now I’m like
I know I have a morbid sense of humor. I’m not afraid anymore. I realized that if I was supposed to die that day I would have, but I didn’t I am here. I am very much alive and I plan on living everyday to the fullest!
My Mom and I went out for lunch after my physical therapy and she was talking about how my sister worked at a chocolate shop and she was hoping she would share some of the ticks of the trade with her. I start giggling and Mom looks at me and asks “What’s so funny?” I burst out laughing and go “She took the secrets to HER GRAVE!!!!” Of course at this Mom now bursts out laughing and we’re both laughing in the corner of the restaurant with tears coming down from laughing. My sister died in a few years ago unexpectedly in the same hospital I was treated at for my blood clot so needless to say it was not the most pleasant experience for my Mom to have the doctors telling her I may not wake up, and knowing that her one of her other children had already died in the same hospital.
I think that is one of the other life lessons this has taught me to stop trying to live life on my terms. I used to be a total control freak and want to control everything, now I only try to control 75% of everything…hey it’s progress! I never claimed to be perfect! I am working on continuing to let go and let God, but even his 007 needs some time to be a control freak, I’m still working on my training missions!
So today I am trying to stay calm and not worry about the cardiac testing, let go and let God. Try to remember that I am too blessed to be stressed. I am very blessed and I am trying to just let go. Right now I am more curious that anything else to be honest. I just want to know IF my heart is still enlarged. I think with everything going on I just want to know.
I had physical therapy and I was laying on my back. I realized that having my back turned on and doing my physical therapy is NOT A GOOD IDEA! My brain gets WAY too confused! So I asked to stop and turned off my back, which is kind of funny when you think about it. Hey can you give me a minute I need to turn my butt off… I actually said back off I was trying not to raise an eyebrow. So I did that and then went back to my knee exercises. I then did my normal stem and then they said they weren’t going to tape me. So I said okay and I put my knee brace back on and then in comes doc and he asks if I want to be taped..so I tell him I thought I wasn’t being taped and he laughs and said he went out to his car to get it for me! Aww how sweet! So I got ducted taped again! (It’s actually KT tape!) So I’m good to go!
So Mom and I had a bit of a rough start…she got her car stuck in my ditch. So she tried to push it out, no such luck, she called Dad and together they tried to push it out, no such luck. They ended up calling a tow truck for the car. Now when it initially happened I started laughing because my sister Karen, may she rest in peace, did the SAME THING probably 5 years ago or so. So I laughed not at my Mom, but really more remember the situation and how it had transpired. But we were fine, the car is fine, it was an expensive start, but all is well. Dad saved the day by lending us his car and he stayed with Mom’s car until the tow truck arrived, they played rock, paper, scissors, Spock to make the decision.
I have noticed that my chest has been bothering me today from the stress test yesterday. I know this is normal. I told the pt doctor that I had the stress test, he asked about results I said I wouldn’t hear for at least a week and if I hear faster than that we’re all in trouble! I also told him I might not hear anything until after the echocardiogram and my follow up appointment which needs to be scheduled. My pt doctor asked if I ran on a treadmill and I look at him and say “In case you haven’t noticed I have crap knees! They chemically induced it. This was the 5th or 6th chemically induced stress test.” So we discussed how I am really calm during the stress tests because I’ve had so many at this point. I think I should get a punch card for them! I want a t-shirt after 10! It should say “I’ve survived 10 stress tests, GET OUT OF MY WAY!!!”