We are Warriors!

My daughter had to stay home from school today because she has an awful stomach bug. I was up caring for her and she kept telling me that she was sorry. I told her that she had nothing to be sorry for, but she said she was worried about me because she knows how "fragile" I am. I told her "Nonsense, honey! You don't have to apologize to me, I am your Mommy and this is what Mommy's do. Besides I am a warrior, and I want to take care of you. You are more important than my issues, and besides, I am having a better day than I have had in days".

 So, I spent the day taking care of her and snuggling with her.

I was wearing my mask because my white blood cell count is low, and I need to do what I can to prevent myself from picking up any viruses. Used a lot of clorox wipes, blue puke bags and lots and lots of hand washing. I had a migraine start to escalate, so I put on my Cefaly in hopes of preventing it from escalating further. As I washing my hands, I glanced up in the mirror and started laughing. I looked fantasmic. I had my sleeping goggles on top of my head, Cefaly on my forehead, glasses on, mask on, and telemetry monitor on. I had to laugh, I looked cosmic! Even though Mallory was feeling yucky, I said (in a robot voice) "Mallory! I am not your mom, I am a robot". She started to giggle. I heard the most heavenly words "Mommy, I love you! Even when you don't feel good or I don't feel good, you always find a way to make us smile. We are Warriors (as she makes growly noise)!"  

 Ha! Ha! I look beautimous!

Yes Mallory, we are Warriors. Warriors don't give up. Warriors keep on fighting, and we find another way around if there is something blocking our way. It was a trying day, but I wouldn't change it for anything. Even when sick, we find ways to smile and make the best out of our current situation. I know that I will remember this day for a very long time, and I am sure Mallory is going to remember it also. 

Morale of the story: Don't give up, keep moving, find another way, and don't forget your smile along the way. :)

I especially love the bed head hair sticking out in the back!

Mallory and I had a great laugh.

Why I am so open...

This has been a very trying week to say the least. I don't know why, but this has been a very difficult week full of lots of tears.

I am not giving up hope nor will I ever. I am determined to make a difference in this world. Why am I so open and share so much about my life? Do I do it for attention? NO, not in the least. I decided a while ago that in order for others to understand how truly horrific migraines can be, they needed to see the good, the bad and the ugly.  I felt that if I were only sharing the happy moments of my life, it would appear as though my life is all sunshine and lollipops. Of course we don't like others to see us at our worse, but I gave up on that a while ago. If they don't see migraineurs suffering at their worst, the stigma will live on. It was very hard to open myself up and share all the details of my medical issues. Sharing my story has been very therapeutic for me. I am able to educate others, as well connect with so many people that suffer with migraines and other comorbid illnesses as well,

Throughout this journey, I have learned a lot. I don't take the little things for granted. I try to spend as much time with my family as possible. Before I was diagnosed with Chronic Migraines, I had no idea that migraines could be chronic. I thought there was no way that I will have that many migraines a month (15+ ). I thought I was just having a few horrendous months, but they would pass and I could get on with my life. Boy, was I ever wrong. I have migraines every single day. My baseline pain in 5/6, but I can function through it. I push myself. I am determined not to be a couch potato and do nothing with my life. That isn't me. So, I have found a few things to help occupy my time and learn at the same time.

I started "Making the Invisible Illness, Visible" on Facebook, because my daughters highly encouraged me to do so. They were like, having your own FB page will help boost awareness. My oldest daughter told me that it would be very beneficial, because my personal page wouldn't bombard all the people that didn't want to read about my migraines and such. Creating that page has helped me so much. I share personal things I have gone through, I provide educational links so people can learn more about a specific illness, I post inspirational memes, and whatever else I feel like. I think it helps me to talk about it and share my experience with others.

I would like to update my blog every day, but I am too sick or too exhausted to think of a sentence, let alone several sentences.

I am very depressed right now, basically because I'm stressing about finances. I  am also grieving the Amber that I once was. I fight. I am determined to get to the root of all of this. I refuse to let the chronic illnesses define who I am. I want to have as much control of my life, that I possibly can. I use up all of my spoons in a day and I have to borrow from other days, just so I can spend quality time with my family. There are days that I know I am going to pay for it later, but that's ok. I want my family to remember happy smiles and positive outlook can make a big difference.

Living with a migraine every day, can be challenging. I don't do anything for my migraine until the pain starts to escalate beyond by baseline pain level, which is a 5/6. There are trigger I can avoid, but there are several I have no control over, such as weather/shifts in barometric pressure, full moons and other environmental factors.

I do my best to just keep dancing it out, but some days my body wins. I do need love and support, every chronic illness person needs love and support. Thank you for reading. Hope y'all have a good day, free from pain.

Lost and Broken

I have not posted to my blog in a while because I have been struggling emotionally, physically and mentally. When I am down in the dumps, I have the tendency to shut everything out. I know it is a bad way of coping, but that is how I have been my entire life. I go to private, personal therapy once a week, and I also go to group therapy once a week. It is something I really need to work on, but at the moment in time, I am not ready to deal with that. My therapist says I need to work on other things first, such as loving myself. Crazy right? I love to reach out and help others. I love to smile. I love to see other people smile. Yet, I do not think highly of myself. I have always had a low self-esteem, so my therapist is working with me on this in private and group sessions. The past couple of months have been so trying. I have been so scared and terrified of the unknown. I continue to run fevers. I have had to go to the ER twice. Once for stroke like symptoms and seizures and another time because I collapsed on my way to an appointment. I hate being this enigma, this zebra, this puzzling patient that nobody can figure out what the heck is going on with my body. I had to go to a hematologist/oncologist last week because my blood levels keep dropping. My body isn't producing blood as quickly as it should. My white blood cell count is pretty low (3) at the moment, along with red blood cell count, hemaglobin and hematocrit are low. My HCT (hematocrit) dropped 2 points in under two weeks. There is a big question as to whether it has to do with my bone marrow production or other. Doctors are trying not to do anything invasive at this time, if possible, for fear that I will bleed out if they do. It is frustrating for many because they don't understand why the doctors don't just go exploring and try to find the cause. But since I am "stable", we agreed it is safer to do the less invasive tests first. I don't want to bleed out and I know the doctor doesn't want me bleeding out on his watch. They are keeping a close eye on my white blood cell count. The word "leukemia" came up, but as of right now, all is clear, thank goodness. I have to do a 24 hour urine collection for more tests. I continue to battle daily migraines. On a pain scale with zero being no pain at all, and 10 being the worst pain that one has ever experienced, my baseline pain is 5-6 on a daily basis. I never say my pain is a 10, because it can always get worse. The pain for the rest of my body has been a 9 the past few days. It hurts so bad just to walk. I wince and cry out in pain. I am so lost right now and so scared. I am sinking into this deep, deep depression because I am battling so many unknowns. I have no control over my flare-ups and attacks. I am stressed to the max about finances. I don't know how we are going to make it through this. It doesn't help that I have to keep having more tests done. I am not giving up. I am just so scared right now, but I know that this too shall pass.