awareness is not for me

It has been a while since I have done a post of any kind on my blog. I have nothing exciting to report. This past month has kicked my @$$! I've have a fever for over a month and they have yet to find a cause. I went to an Infectious Disease doctor last week. He is baffled. I go to a new urologist tomorrow, to see if he can shed any light on the voiding issues. I have my cane. I do not need it 100% of my life. I am supposed to have it with me whenever I walk, so I have it for support if needed. I am not complaining. Sometimes, I just don't know what to say. I don't want to be viewed as a complainer if I tell you how I am truthfully doing, but I don't want it to look like my life is all rainbows and butterflies. I am not trying to raise migraine awareness so that people know I suffer from migraines. I am trying to raise awareness because so little is known about migraines. What causes them? Why does one person get them and another person does not? I, along with thousands of other people, are trying to raise awareness, so that more funding can be given to research and studies. I am not doing it for myself. I am doing it to hopefully save others from having to suffer with chronic migraines. I am doing it for future generations. I am doing it, so that one day maybe they can find a cure. The stigma and treatment options for migraines are never going to change, if we don't push for awareness. There wouldn't be all these treatment options for cancer if nobody ever spoke up and said we need to figure this out. We need to find treatment options. Look at AIDS, it used to be terminal if you got that diagnosis, but people kept pushing for awareness, studies, etc. Now there are several treatment options. Awareness has got to start somewhere. Nothing will ever get done if we sit back and wait for somebody else to do that. That is not me. I am a go getter. I am a fighter.  I want to raise awareness for research and studies. I want to change the stigma of migraines. I want to educate the population, that migraine is not a headache. It is a neurological disease. I want to raise awareness so migraineurs get the respect and compassion, they truly deserve. I don't want anybody to ever hurt and suffer like this. Awareness is not for me. It is for my girls. They have both had migraines. I do not want to see them endure the challenges that I have had to endure. I am alive, but I am not living a life.

Nobody knows.

Long Road not knowing where it leads

These past few weeks, I just feel worse and worse, instead of better. My migraines are still an issue so but there is so much more to the puzzle. I am getting discouraged because I don't want this to be my new normal. I don't want to have to walk with a cane forever. I don't want to have to straight cath myself the rest of my life. I don't want to suffer short term memory loss. I don't want to struggle trying to find the words that I want to say. I don't want to be viewed as an attention seeker, weak, fearless, etc.

Truth is, I am scared shitless (pardon the bad word). I have no idea where my life is going. What I do know is that my body is attacking itself. I have had a fever for >2 weeks now. I was treated for 7 days with with antibiotics. My primary care doc had me take my thermometer into his office today, to compare with the thermometers in his office. My thermometers are accurate. He is worried that we are going to have to get Infectious Disease involved and do a big work up because I have fever of unknown origin. I am concerned that I am so short of breath, even lying still in bed.

I just can't bring myself to use the cane if I am all by myself. I don't want pity. I take it minute by minute if I have too. Believe me, this is not easy. I try not to complain, but some days, I really get depressed because I can't do the things that I want to do.

On Friday, I was home alone, I don't know what happened but I fell while I was in the bathroom. I have an alarm set, because I am supposed to go every 3 hours whether I have to go or not. If I can't go myself, then I have to cath myself. I remember reaching in the box for the catheter, I don't remember anything after that. I don't know if I had a stroke, a seizure, just lost balance and fell, or what. I woke up at 11:40 and I was lying on the bathroom floor. Jamie even came over to my house during that time because she felt that something wasn't right. She couldn't get in because the door was  locked and she couldn't remember the code for the garage. Ironically, I had told her that I needed to get her a key for our house. My phone was in my bedroom. It scares me. Am I not even safe to be at home alone anymore?

I don't know where this road is going, but I will take things as they come, and learn along my way.

I am so in love with this song, but I can't find it for purchase anywhere.

Grieving

I am a Misfit and a Warrior!

Although I have not officially died, I feel like a big part of me has died. These past couple of weeks, I have really been grieving the "old me". I am grieving because as time goes on, I feel like I am falling apart. I am grieving because I am not dependable. I can't make plans in advance because I never know when I will have a flare up. I try not to make advanced plans because I don't want to viewed as "flaky" because I have to cancel at the last  moment. Even though I have a great support system, I feel so alone and depressed. I am depressed because I am no longer the girl that I used to be, otherwise depression wouldn't even be an issue right now.

The death of Amy, a member of Chronic Migraine Awareness (CMA), hit me really hard.

I don't want to lose the battle with migraines along with all my other medical issues. I am determined to spread migraine awareness. I am not trying to raise awareness solely for my benefit. I want to raise awareness so more funds can be added to aid in migraine research and studies. I am doing it so people won't have to suffer day in and day out like me and all the other chronic migraineurs out there.

As a Mom, it is so hard not feeling guilty. I don't want my girls growing up and hating me for the rest of my life because I was always sick. I hate that I can't do the things I want to do, or be as involved with them at school. I am not going to lie, I am living a really rough life right now. But I do everything in my power to be there for my girls. There are times I need help and I have the hardest times asking for receiving help. I love to serve others, but it is hard for me to accept help. I feel as though I will be viewed as lazy.  Right now, my house is sick because I have not been able to clean it fully in over two weeks.  I cannot sleep knowing there is so much to be done. I feel guilty that I have to ask people for help in getting my girls to dance. I feel guilty lying in bed while others are cleaning the house, cooking dinner; tasks that I should be doing because I am the Mom. My Psychologist tells me to let go of the guilt, but I just don't know how.

I grieve the girl that was always happy, dancing and singing anytime, anywhere. I taught my girls early on to sing like nobody is listening and dance like nobody is watching, and they do. Rick is even starting to interact and be silly with the girls, without me coaxing him.

I get so frustrated when I can't remember what was said. I get so embarrassed when I am right in the middle of talking to somebody and I completely blank out for about 30 seconds. When I come to, I always have to ask what we were talking about. I forget complete conversations I've had. I swear, I constantly look like the biggest idiot because I stutter, can't find the words, blank out mid-sentence, etc. Just another thing that I am grieving. I have sticky notes everywhere reminding me about everything going on in my life. I can no longer depend solely on my noggin.

I do the best that I can, but that doesn't stop me from feeling guilty about being an unavailable wife, mother, house keeper, etc.  I don't know what I was thinking when I chose this life, before I was born.

I still have to share my history, but I don't have the courage to do so...yet. I am ok using my cane in public when somebody else is with me, but I can't bring myself to do it alone. I am so very scared right now. I am lost. I have not given up hope that the old me will return. I mean Preston Burke is returning, to Grey's Anatomy, after seven years, so there is hope.

Meditating during Cefaly session.

Day 8 of Cefaly treatment.

Pretty much sums it up.