May 26, 2012
Being sick or recovering from a major life-changing surgery doesn’t come with an instruction manual. Advice for after care is always helpful, but when you find yourself facing a rare disease or recovering from a surgery which is not understood by many doctors, it is sometimes hard to understand what is really going on. It’s important to stick to follow-up appointments and to listen to your body when it tells you something just isn’t right.
Sorry I haven’t update in a while. The truth is, I’ve been doing really well. By no means am I perfect, but as far as recovery goes, I’m very happy with my progress. I had two great months. I’m still completely off insulin. My blood sugar levels have been doing pretty well. I do tend to run low at times and with any activity I need to make sure I snack often. As for me, I feel symptoms when my sugars are in the 80s and 70s. Anything lower it just becomes foggy and frightening. I’ve become very aware of my levels and I’ve been doing a great job about listening to what my body is telling me. Even though I deal with some low blood sugars, I still think a life with pricking my fingers is better than a life with disabling pain. I feel healthier now and I’m still so grateful for having a second chance at life.
As some of you may know, I have a pacemaker. My heart has been doing much better since having it. My heart rate has improved greatly and my blood pressure has finally been going up and staying in the normal range. After two years of suffering with low blood pressure, I’m finally seeing days now where I can move around and not feel so dizzy and weak. But not everyday is perfect and I still have my moments.
The past few weeks I had a few scares. I noticed my blood pressure was dropping. When I feel it coming I often check my numbers with a home arm blood pressure cuff. I was around 76/45. When I get into those numbers it tends to last anywhere from one to three days. I rest and wait it out. I do have medication I can take to help raise it up but I only take it when it is absolutely needed. By the end of day two I noticed that I was getting sweaty and feeling chills. It hit me pretty fast. At first I thought it was caused by low blood sugars. My sugars turned out to be fine. My head was pounding and the room seemed to look a bit blurry. So I checked my blood pressure and it had jumped all the way up to 145/90. It felt like I had a fever, and since I don’t have a spleen a fever is a reason for a trip to the ER or doctor. So I checked my temperature and it was normal. The symptoms lasted for about fifteen minutes. The next day I spent the whole day in bed again with very low blood pressure. The pressure building in my head had become too much to handle after thirteen hours of feeling weak and tired, so I took my medication. I’ve never had a problem with taking the medication before in the past. It tends to give me chills after a few hours. But I was worried about my blood pressure spiking again. Sure enough, after three hours I was back up to 149/90. I have never in my life felt so much pressure on my head and eyes. My head hurt so bad I couldn’t think straight. My heart rate was fine, no fever, oxygen was good…but I was freezing and covered in sweat again, blurry vision, then got chest pain and some tingling in my left foot. I was able to stay calm but was pretty worried. My symptoms lasted about an hour and then slowly my blood pressure finally went down to a normal range.
In the morning, after only getting three hours of sleep I made an appointment with my GP because I wanted to make sure it was not being caused by an infection. They got me in and the doctor tried to tell me it was just a cold. I was very upset. I had a slight sore throat which I tend to have most of the time from the dry air. It felt like he wasn’t really listening to me and he just kept saying I had a cold. Now I have not had any sneezing, coughing, itchy eyes, fever, or anything. I know my body, and my blood pressure has never done anything like that before with a cold and the fact that I felt fine and only felt bad when my blood pressure was low or high, clearly didn’t fit the symptoms of a cold. I know I’m a strange case, I always seem to end up having something rare. I know I can’t expect a GP to have all the answers. Sometimes doctors just say it’s something common when they don’t know for sure. I don’t know how many times I’ve been told it’s a cold, just acid reflex, in my head, panic attack, depression or something else that seems to fit an easy answer. Funny since all of the diagnoses were wrong in the beginning, when really it was SOD, pancreatitis, two different arrhythmias, low blood pressure and so on. I tend to put more of my trust in what I feel and the doctors whom specialise in the pancreas and heart. As far as finding a doctor, trust has to be earn. A doctor who doesn’t judge, who listens, gives proper testing, explanations and options and has high success rates- those are the doctors I tend to stick with. So far my specialists have been spot on. So for my next step after my disappointing appointment with my GP, I did what I should have done in the first place, I called my cardiologist.
They got me in within a few days and had my pacemaker guy come in to review what my heart had been doing over the past three months. He said I had six times where I had an arrhythmia. The longest one lasted 13 minutes. He also said that my body is more sensitive than most and I’m very aware of my heart. So even a small arrhythmia that lasts for only a few seconds could easily take me a full day of bed rest to feel better. As far as my low blood pressure, they have ruled it as aftermath of pancreatitis and prolonged uncontrolled pain. I’ve started a new medication to help with my heart and I’m having some blood work done with a follow-up in a month.
A few days after, I found myself in pain. I just knew that it had to be a kidney stone. So, my husband took me to the ER. They did a CT scan and sure thing – kidney stone. I also threw up 15 times within 24 hours from pain and delayed emptying issues. It was not a full day. When I was at the hospital, I asked them to please check to see if I had an infection. They had to use a cath since I was unable to go since the stone was stuck. They seemed to be surprised when the urine came back as having bacteria in it. I wasn’t. I listened to my body, looked at my symptoms and just knew I had an infection. My GP didn’t listen to me but at least the ER was willing to. So, I was given antibiotics to take for a week to get rid of the infection.
My blood pressure hasn’t spiked since. Hopefully it won’t be a problem again. But, other than my short lived drama from a few weeks ago, I’ve been really happy. Still thankful for each day. Still taking it easy. It’s not easy getting sick. And when it’s something new it can be frightening and can become a struggle to finally get a proper diagnose. But it’s so important not to let one doctor get you down. Or to let one person try to tell you it’s something it clearly is not. I just try to remember that we are all people. We all make mistakes. Finding answers to illness is not always easy. But it is also so important to not give in or give up – being your own advocate is key.