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.
Went to the doctor he upped my Potassium, he actually DOUBLED it. Which isn’t a surprise. I mean it was easiest to do that instead of taking 1 pill I take 2, in one week I will get my blood drawn to see if my Potassium is high enough. I have been eating potassium rich foods to also help bring it higher since we found out it was low again. I am tired of the blood draws. I am a hard stick to begin with so having to have my blood taken by the vampires is NOT my favorite activity!
My hamstrings are better today, but still very sore. I have physical therapy today and I am just going to take it REALLY easy today. Nice and slow and go from there. Sometimes you just have to slow your roll down. I’ve also been feeling dizzy and light headed, which I have a feeling is the heart rate. More cardiac testing soon. We will get this figured out!
So we learned a few things yesterday during my physical therapy session a) my competitive nature will make me go farther than I probably should and b) my heart rate can and will go over 170 doing the exercises if I allow myself to be pushed. So I was working with the new guy, and he does know most of the medical history, he did know about the nuclear stress test, the tachycardia and the heart issues. What he doesn’t know about me is my competitive nature and that if you say to me oh you can do 2 more, I’ll do 4. So we got my heart rate up to 170 and today my hamstrings are sore from the exercises yesterday.
So I am resting today to allow everything to relax and repair from my session. Last night my knees kept buckling and I almost fell multiple times, so that wasn’t very happy either. I know part of that was that I was so tired from physical therapy, the other part of that was that we pushed my body too far. My heart rate was 170 and my oxygen levels were low and at one point I got dizzy. This is not a combination that is healthy. I am familiar with this combination due to the blood clot, but it’s not healthy. I also today am having some mild chest pains which I am chalking up to my increased heart rate yesterday.
So I talked to my doctor about my ER visit at the beginning of the month the cardiac testing that has been done and what will be done soon. He asked if they will be looking at the electrical element to the heart, I told him I don’t know yet. He suggested that might be the next step since the plumbing is looking good, but my heart rate is not, maybe looking at the electrical aspect of the heart is where we need to look since the blood pressure is spot on. So we shall see. It also looks like I will be coming off the blood thinners in the next month which I am HAPPY about!! YAY for BROCCOLI! I will be able to eat as much as I want without having to worry about INR levels! I am so excited about that you guys have no idea! I am going to be eating green smoothies and all the vitamin K foods, I might turn into Kermit the Frog for a bit from overdosing on greens..but I’ve missed being able to eat them to my heart’s content!
I was thinking about physical therapy and part of the problem with me is I am really competitive. As a child I did soccer, swim team and I did gymnastics for a short period of time. I mainly did soccer and swim team. If you tell me oh come on you can do 2 more, I will do 4 more just to prove you wrong, but then I’ll pay dearly for that. My heart rate going up so high and me almost passing out that was me being stubborn and not stopping when I should have. Later me almost falling and my knees buckling was not good. I need to learn to say no. I know my regular doctor was not happy you could read his face. There is a fine line and I went to far. The sad part was we didn’t do that much yesterday in the grand scheme of things which is why I think the new doc didn’t realize how far he was pushing me.
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!!!”
So today I had stress test 5,003…okay I MAYBE exaggerating by a little…it was only stress test number 5…or was this 6? See I’ve had so many I can’t even remember! I remember I had a couple of the old fashioned ones where you had to actually RUN on the treadmill until you thought you were going to throw up, then I learned that they could actually do a chemically induced one so I had my cardiologist order those for me because then I had one of those who realized that having me run on a treadmill was not good for my knees. So then they did the chemically induced stress tests, so then I had one of those, then I had a couple of Nuclear stress tests and then that brings us to today so yeah I’ve had just a little experience in the stress test world. I mean you would think I am a stressed person…or something. Actually some people in the past would use the description “high strung” when speaking of me, which I would try to act like that wasn’t an accurate descriptor but I just told you how many stress tests I’ve had in the last 10 years so I don’t think I should even try right now!
So I got my stress test with all the beautiful pictures of my heart I should hear back in about a week from the doctor what the results are, if I hear anything sooner that’s a BAD SIGN. When you are dealing with cardiac testing no news is GOOD news. I’ve learned fast test results are NOT good. I do however get to eat some greasy meals for the next couple of days to help absorb the medicines they gave me today which is always a good excuse to cheat on my diet! I had a bacon cheeseburger and fries for lunch today.
The first time I went through all the cardiac testing I worried myself to death. I wanted to know what was wrong with my heart and if I was going to die, etc. This go round I’m like I’ve already been told I should have died 6 months ago, I’ve done this test 2 times previously I’m good to go! I was so relaxed my blood pressure was AWESOME! Much better than it was yesterday at the orthopedic’s office. Yesterday the orthopedic was worried about me stroking out, today I’m at the cardiologist getting ready for a stress test and my blood pressure was prefect.
I will say that with the chemically induced stress tests they are a bit weird because you are sitting in a chair and they give you the medicine via the IV and you feel your heart start to pump really fast and you are just sitting in a chair minding your own business. The medicine works fast too. My chest still hurts a bit tonight from the test which is common. I hope they figure out what is going on with the high heart rate because I am really over all this mess! I want to be DONE with all of it like yesterday!