"Always the Statistic", raising awareness one post at a time.I keep "dancing" the best way I can.: September 2014

Tuesday, September 30, 2014

Dance It Out

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Thursday, September 11, 2014

I do my best to stay positive, strong and never give up the fight, but lately, I am so overcome with emotion that I don't even know where to begin.

Originally I was put on disability because my migraines had turned from getting 3-4 a month, to getting one every single day of my life. Since then, I have been diagnosed with other issues. Currently, I am more scared then I have ever been in my entire life, but I am not giving up. I am still staying positive and staying focused on what I am fighting for. I am fighting to make the invisible illnesses, visible, to people that don't understand all the "invisibles" out there.

This week has been weird. I had to go to Infusion Center to get migraine cocktail and 2 liters of fluid. My cocktail consists of Magnesium-Sulfate, Phenegran, Toradol, Solu-Medrol, and Depacon. It takes about 6 hours. The infusion does not instantly make me feel great, but it helps. I usually have to rest a day or two before I start to feel the effects. It kicked the migraine I had by Tuesday, but by Tuesday night I had an atypical migraine for me. It was in the back of my head and pain shot all the way through my brain and out my left eye. I couldn't move without puking. Ugh! I think, really. Can't I have a day where I feel enough to actually get things accomplished and feel like a normal person? For now, the answer is no, but I am not giving up or giving in. I will fight to the bitter end.

I have internal bleeding going on somewhere, but doctors are unsure of where. Currently they are trying to be as least invasive as possible, due to my history. One of my doctors called my yesterday and told me that my blood levels are very low. He is worried. He wants me to set up an appointment with a hematologist, because my body is not producing enough blood. I don't know what that all means, and right now, I am ok not knowing. I didn't make the phone call today, because I just couldn't do it. I would just break down into tears. I am in a denial/this can't be happening phase.

Right now I need all the love, strength, prayers, positive thoughts, etc. that I can get. I am finding that I can't do this all myself. I wish I could. I hate asking for help. I am feeling pretty worthless right now, because I can never accomplish what I would like to do. I am so exhausted and just want to sleep all the time (I am sure it is because my hematocrit and hemaglobin are pretty low). I still push myself and try to do a couple things. I take Ozzy for his daily walk, even if it is only for 10 min.

I am terrified of it all right now, but I know that things will happen as they are supposed to. This is my trial and I accept. I will go through all these challenges, 1) because I obviously have a lot to learn and 2) I would rather it be me going through this than anybody I loved or cared about. I don't want my loved ones to ever have to experience something like this. I will take the pain and suffering to spare them. This is my trial and I will endure to the end.

Tuesday, September 2, 2014

Don't judge by appearance.

I am sorry it has been so long since I have posted anything. This past month has been so hard for me. Long story short, I am going through a period, where I deeply grieve myself. I am in mourning for the person that I used to be. Seems that as time goes on, I lose more and more of my independence. I have gotten used to using my cane. I do not need it 100% of the time, but I was told by my doctors that I have to have it with me at all times to help with stability. My right leg completely gives out without notice. I have times that I am very unsteady on my feet. I get so light headed and weak within 2 seconds of feeling normal. My driving is very limited. My house is a big mess, but I can only do a little each day because I don't have the strength or stamina.

I have cried a lot this past month. I am struggling. I am so very scared, because of the unknown. Changes are happening so fast and I feel so helpless. I know we are all going to die one day, but I don't want to die yet. I have high hopes that I won't, but I am also realistic. When it is my time to go, I have no control, and I will have to say my good-byes. I pray that I will be around for at least 20+ years. It is hard to explain because mostly everything I am struggling with, is internal. You can't look at me and automatically know that I am sick. When people see me and I am wearing make-up, hair is done, and my brave face is on, people always say "you look so good". It is easy to judge by outward appearance. So, I will share with you, what I posted on my FB page "Making the Invisible Illness, Visible".

Remember the old saying "Don't judge a book by its cover"? With all my invisible illnesses, I sometimes feel like I am being judged by how I look externally, and not how I feel internally.

We all have our own battles. No one person's journey is the same as another's. We are all individuals. So why judge or push something away that you don't understand? Why not take a couple minutes to stop and think before assuming? I am a work in progress, I am not perfect, nor have I ever claimed that I am perfect. I can say that I truly care when I ask how you are doing. I don't want the answer everybody expects, "I'm fine". I want to know how you are really doing.

As a chronic illness warrior, I have mastered my brave face and I do my best to keep pushing forward, but there are days that I literally can't get out of bed and I hate days like that. I want to be with my family. I would love to be able to go to work. I would love to have more control of my life, but at the moment, my body has more control, but I am fighting it. I refuse to give up. I rely on smiles, laughter and sarcasm to help me cope. Am I brave? I try my damndest, but I do have my days that I don't have the strength. There are days that I am so scared that I just sob, secretly, behind closed doors when nobody is around. Whether you are strong and brave or weak and timid, we are all deserving of love and compassion.

Please don't assume, that as chronic illness sufferers, that we are fine. We need love, strength, compassion, and support more than ever. Take it from me, living with chronic illnesses can make you feel pretty damn lost and alone. One day you're working and feeling great and then BOOM! Next thing you know you are being told that you can no longer work, your driving is limited, you have to have a cane to help with stability, you have to depend on others.This has been so hard for me, because I am an independent person. I love to help others, but I have a hard time accepting help. I want to keep living my life as before, but realistically, I know that I can't. I carry so much guilt, pain, sadness, etc. because I can't be the person I want to be. I am a go getter. I truly loved my job and I miss it so much. I am mourning me. I am not the same.

The thing that has been hardest for me, is my short term memory is not the best. I have a hard time speaking. I can literally forget what I am talking about mid-sentence. It is utterly humiliating and oh so embarrassing. Going from a girl that could pretty much remember anything to a girl that forgets everything, is so humiliating! I will wake up sometimes and I won't even recognize my own surroundings, at all. I am completely disoriented. Frequently, I have to ask somebody what they are talking about when they answer a question that I asked. The person then has to explain what my question was, and sometimes I will remember the answer they gave me and other times, they have to repeat the answer also. It has been so hard for me.

So much I want to do, but I am not giving up. I keep pushing. I will fight until the day that I die. I will continue to smile and make the most of what is given to me. I don't like to dwell on the negative, but someday's I have a pity party, to which we are all entitled to, but I don't let myself stay down. I get back up and fight and push even harder. I choose to look for the positive. I choose to seek what I can learn from all this. I choose to be my own advocate, and I won't give in until somebody will listen to me. Those of you that know me well, know that I am persistent and I back up my persistence with research, studies and facts. I am not only fighting for myself, but for all the chronic illness warriors out there.

NEVER! NEVER! NEVER! GIVE UP! (Winston Churchill).‪#‎dontjudgeapersonbytheirappearance‬

Mrswelches Warriors

‪#‎spoonie‬ ‪#‎chronicillness‬

-MrsWelches

That is a quick run down. I will update more , hopefully, tomorrow. Please pray and hope for an end in sight of this wild ride. I am getting motion sickness and just want to land with both feet safely on the ground. I am a fighter and I will fight until the day I die. I refuse to quit and take no for an answer. My current challenges:

Intractable, chronic daily migraines
fibromyalgia
Reynaud's Phenomenon
Sjogren's Syndrome
Depression
Several different types of anxiety.
Painsomnia
Gastroparesis (my stomach is paralyzed, and it takes forever for food to move through my digestive tract)
Mysterious blood disorder that I am being worked up for

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Amber Gibb Carter

UPDATE #1

9 MINS AGO

I have not been able to work since January, 2013. I worked as a NICU Nurse/Charge Nurse at Primary Childrens Hospital and I loved so much. Being a NICU nurse was my calling in life. I was put on disability because my migraines had changed from episodic, to where I would get 3-4 a month to getting intractable chronic migraines in a matter of days. Originally, I thought I would be able to return to work within a couple of weeks, I had no clue that 20 months later, I would still be out of work. I still have daily migraines, but they are not my biggest challenge. I am fighting so many challenges as my body and my "health" continues to baffle every single doctor I have seen. I keep fighting, but it is hard. I am deeply grieving me. I am grieving the, "Amber", I used to be. I hate that I have lost so much of my independence. I stay positive and keep fighting and searching for answers, but I need help. Please help my family and I. I will "pay it forward" when I am able, I give you my word.

It is time that I asked for help and stopped trying to do it all, because reality has hit me, and I know that I can't. When I have to choose between paying a medical bill or putting food on the table, of course I am going to make sure my family is provided for. I don't want to be the cause of all the misfortunes.

My family got in a car accident earlier this summer, and then my daughter's dog died, unexpectedly. So, all of our "emergency" fund has been depleted...

Thank you, in advance, for your help.

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