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. 

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

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. 

Cruel and Usual Punishment

So, Its been six weeks since Ive been having trouble with my gallbladder. Some days Im fine, some days im throwing up. Im sick of being sick. I feel tired and run down and I have a urinary tract infection. Thankfully my job has been so understanding and Ive been managing to work 25 hours a week. I meet with the surgeon about getting my gallbladder removed on October 6. Im looking forward to hearing what he has to say and hopeful that I will feel much better once it is removed. 

I think the problem itself isn't that bad its just the its been dragging on for so long long. Some days I have a lot of pain and it really takes the good out of me. Add in work and my mom being in the hospital I just feel really overwhelmed and tired. 

I have been having tarry stools the last couple of days so tomorrow I am going to see my doctor. Maybe I will feel better after that.

Momma Bear

So, My momma has been in the hospital for 4 weeks today. It been so hard to focus or so much besides worry about her. She has Parkinsons disease and it has been causing so many complications for her over the past 7 years. 

I want to go to Stephenville to see her but about a 6 weeks ago I have a gallstones attack. I am currently waiting for surgery to get my gallbladder removed. I have an appointment with a surgeon on October 6th. So until I get my gallbladder its not a good idea for me to travel anywhere there is no hospital. There is a hospital in Stephenville but they are not equipped to deal with me. 

So I am here in Calgary waiting it out somedays I feel fine some days I am nauseous and in pain. 

I am nervous about the surgery but I am excited to get back to normal. I am sick of being sick!

Thank you so much for reading my blog and keep us in your prayers!

On and On

So, this is normally the time would I would write and say that I am feeling all better. However, that is not the case. I am still taking antibiotics and I still have lots of blood in my urine.

I am following the doctors orders but am also trying some home remedies. So far I have tried drinking lots of water, cranberry juice, ginger tea, honey, lemon, cinnamon, garlic and ginger. 

Fun fact when you have urinary tract symptoms and have a bleeding disorder do not take cyclokapron.

Hopefully I will post again soon saying that I am back to normal. 

The tale of the never ending uti

So, this is my life the last weeks. I started having urinary tract infection symptoms in early February so I went to a walk in clinic and the doctor prescribed me Septra so I took it until it was all done then starting having symptoms again so I went to a walk in clinic. This time my urine was so red the doctor said I should contact my Hemophilia Treatment Centre. So on Saint Valentines Day I went to the clinic and got 4 units of Octaplasma, a urine test and an ultrasound. Everything came back normal so they gave me Cipro. So then after they were all done of course the symptoms came back so I went to my family doctor she prescribed me Macrobid. I was hoping and praying that that was the end of it but nope I started having red pee again so I went to my second family doctor and he gave me Teva Cefelixen so Ive been taking that for the past three days and my symptoms just seem to have gotten worse. My urine is very red, Im uncomfortable and im tired.

Zane took me to a walk in clinic today and the doctor there said he doesn't want to give me any more antibiotics because he is afraid I will build up a tolerance to them. He also said I should see an Infection Disease doctor and a Urologist. 

So now I am thinking about going to emergency or waiting until the clinic opens on Monday.

I don't want to go to emergency because its a long wait and the doctors always lean towards some invasive testing like CT scan, big IV;s and drugs. I know sometimes those things are necessary but I don't want to get any scans if I don't need to.

The problem with waiting until Monday is I am scheduled to work on Monday and I only work part time so calling in sick looks bad on me as an employee and I don't get paid.

I spend so much time thinking I need to put my health first but sometimes you have to put your life first because as I am learning if you always put your health first you end up with not much.

Broken Telephone

So, I spoke to my doctor at the clinic today and she said there must of been a communication breakdown somewhere along the way because she was under the impression that I only had red skin and not a huge purple bruise.
Im honestly not sure how that could be because I feel like I communicated clearly but Im not gonna say its impossible I mean people make mistakes all the time.
So, my doctor suggested I go in tomorrow for an Ultrasound and then we can move forward based on those results.
I find the whole situation stressful and I have been eating crackers and granola bars all day. I eat when I am stressed and the lack of control of how I am treated is really bringing up a lot of stress and anxiety for me.
Thank god for the support of Zane and my friends and family.
I hope everyone has a good support system but especially people with a chronic illness.

Clinic Disappointment

So, I woke up Sunday morning with a huge bruise on the left side of my abdomen.
It alarming because I don't remember doing anything to it its big its purple and black and its growing and swollen.
I traced the bruise and today is has grown outside the line and there is a lump.
So ok in my mind Im thinking, its hot its bruised theres a lump inside, this is a classic bleed. So I call my clinic this am and they say don't even bother to come in theres nothing we can do. I have a lot of problems with this. First of all, how can they diagnose something over the phone? Second of all, why is my opinion never factored in? Why don't they think like ok, they personally think its nothing but why would someone whose had this condition for 33 years bother to call us if she wasn't seriously concerned?
If I was a male factor 8 or 9 they would say infuse over the next couple of days and call us with an update.
But because I am rare I am told to just suck it up. Why don't I deserve peace of mind? Why don't I deserve proper care and investigation?
My clinic makes me feel over and over that I don't and that I am an inconvenience because I am a special case.
I am beyond frustrated right now. I went to my family doctor and she has ordered an ultrasound but I can't get in until Friday.
At the moment I am thinking I might just go into emergency tomorrow.
Of all the terrible aspects of Hemophilia I think fighting with your clinic is pretty close to the top.
Im gonna go for a stress nap in the middle of the day but Im hoping when I wake up I feel a bit better about the whole situation because right now I want to scream!