Sunday, October 15, 2017

Managing Expectations

So, when you have a chronic illness you not only have the joy of dealing with how you feel about your illness, you also have the added bonus of dealing with how other people feel about your illness.
Everyone has their own way of dealing with illness. I think a lot of people in my life have reached a level of desensitization my mother and father for example, I feel like I could call and tell them anything and they would just say oh. I think its a coping mechanism. I use to do that a lot when I was a kid. I would pretend I didn't have a bleed so I could go to a birthday party or go outside and play. That's another thing about having a chronic illness you do a lot of pretending. You pretend you are ok when you aren't because you know people are sick of hearing about how sick you are. You pretend you aren't devastated every time you have to miss work and events over and over again. 
The thing is it might get easier for my family to hear I'm sick but for me its almost like its getting harder. I guess when I was a kid I had more support, if I missed school it didn't matter and I didn't have to worry about cooking or cleaning. Now its just Zane and I and when I get sick I have to call a cleaning lady and the dogs don't get walked as much as they would like and my laundry falls way behind. Having a chronic illness is no picnic. My fear is that I will turn into a grumpy, bitter old lady. I am trying to be grateful and pleasant. Some days are just harder than others. 

Friday, October 13, 2017

Hello from the other side

So, today is Friday. One week from my blood transfusion. I feel awful. My heart rate is 127, my blood pressure is 138/98. I get tired just walking up the stairs. I sleep for abut 12 hours then I nap for a few hours then I lie around all day.
My iron is still low and my Hemoglobin is at 113 it should be 150. Im tired and honestly quite depressed. I hate missing so much work. Every night i walk halfway up the stairs, then I catch my breath on the landing then I waslk up the rest of the way. I lie n bed and pray I'll feel better in the morning but I don't. I also have so much guilt. I feel so bad for the strain I place on Zane. He has to miss work and work twice as hard around the house. I just hate this disease it takes so much out of me

Saturday, October 7, 2017

Friday Night

So, I got some blood work done on Friday because I haven't been feeling well. Turns out my Hemoglobin dropped from 150 to 100 and my iron is low. I called my clinic and they told me to go to the emergency room. Zane and I spent 12 hours in the emergency room. It was discouraging and exhausting.  I saw about 8 different doctors and residents. It took 10 hours to give me 4 units of Octaplasma. They said they would admit me then sent me home at 2 am. The whole thing was a torture test. I have to go back in tomorrow to get blood work and see if my levels have gone down and then the doctor will decide what to do from there. The amount of times I had to correct doctors and explain my disease was ridiculous. Today I am so angry and tired and sad. I am sad that this is our health care system. I am sad that not only am I sick but I have to fight and advocate every time I need treatment. I am sad that I have been sick for 8 weeks and I am still not feeling one bit better. 
I am on my way to bed and I am praying in the morning they will give me some plasma and iron and maybe even some red blood cells. 100 isn't dangerously low for Hemoglobin but it takes forever to get back up on my own. What we think happened is that I have a bowel bleed and I have been slowly bleeding for days and days. I am also sad that we had two thanksgiving dinners to go to this weekend with friends and family and instead I am on bed rest. This illness takes a toll on me and the people I love.