"Always the Statistic", raising awareness one post at a time.I keep "dancing" the best way I can.: My quirkiness about organizing and labeling.

"Always the Statistic", raising awareness one post at a time.I keep "dancing" the best way I can.: My quirkiness about organizing and labeling.

My quirkiness about organizing and labeling.

The first part of February was so wonderful. I was having more good days than bad days, which is miraculous. I did not take the good days for granted. I relished in the fact that I could go grocery shopping~~by myself. I was able to to get some of my house cleaned, although if you were to see my house now, you would flip a lid. I am always so amazed how it can take hours to clean, but only minutes, and even seconds to destroy the house. I just want to cry when I see all my hard work when kaput when I was not physically present.

I am very OCD and love my house to be cleaned and organized. I absolutely love putting everything in containers and, I am obsessed with labeling the contents with my handy dandy label maker. I am odd and I love to have all my cupboards, drawers, closets, etc. neat and organized. I hate it when people just shove things where ever, especially when there are labels! LOL! I find it so much easier to put things away tidy, so that my family and I can find things very easily.I love opening my cupboards, drawers and closets and relishing the tidiness of it all. . No clutter. No cuck. But, since I have become ill, I don't get the privilege of organizing everything while I clean because I end up over doing it and then paying for it drastically for days.

I am in the process of trying to spring clean by going through every room and DEEP cleaning. In the process of spring cleaning, I go through and see what we can donate because kids have outgrown their clothes or whatever. I wish I was Mary Poppins and I could get it all done with the snap of my fingers and singing "A Spoonful of Sugar", but I haven't mastered that skill yet.

Don't be fooled by my OCD cleaning issue, because my house can get pretty darn messy and cluttered until I am able to clean and organize all the things that need a home.

I know I am nuts, but cleaning and organizing is the best therapy for me. I feel accomplished. I feel of worth. Far away in dream land, is my family keeping everything neat and tidy. LOL! I have learned to let it go and not stress about it as much, but I am not gonna lie, there are days I gond crazy with all the chaos. Organizing is something I can control, since I don't have a whole lotta control over my body anymore. I can laugh at myself. My obsession with containers, organizing and labeling it all, has become a long time running joke. LOL! :

"Now you know the rest of the story"! (Paul Harvey)


                                      This is a fantasmic song and video that I can relate to, so well.

chronic illness is lonely

Only Chronic Illness Warriors know how lonely living with a chronic illness is. 

I have had a very difficult week emotionally, mentally and physically. I have spent most of this week in hibernation due to horrid, unrelenting migraine. I am so dizzy, which in turn makes my nausea worse. I feel bad because I have been so absent, but I have not been able to function well.

I have been deeply hurt by people that I care so much about. I was blown away, but I understand. People that don't have chronic illness, especially as invisible illness, have a hard time grasping "what is wrong with you". I wish there were a way for people to understand how truly challenging it is to battle chronic illness and chronic pain every day of your life. I have good days and bad days. I never know how I am going to feel. I can't predict when I will have a good day vs. a bad day. I have days where I am feeling okish, so my husband and I try to get some errands done. We can be out and about and Whamo! I get knocked down so hard. We have to go home immediately, which I feel so guilty about. It totally sucks. I have no control over my flare-ups and attacks, so I try to make the best of it.

I feel so alone. I have my husband, girls and friends, but I still feel alone. I miss Girl's Night Out and spending time with my friends. I find a way to keep going. To be honest, I am having a very difficult time moving forward, even one second at a time. I hope this feeling passes.

Pain

OK. Here comes a whiny, pitiful post. This week has been one of the absolute most hardest weeks that I have had to endure in a very long time. I got my Botox almost two weeks ago. I let the nurse practitioner do it, with my neurologist right there, because she was learning. I totally wanted to tell her no, but I know that people have to learn sometime. I remember what it was like being a nursing student. When she was doing the injections, I was a little concerned because she would scrub the area with alcohol when she was done. Gah! Not supposed to do that, makes botox move and settle elsewhere. My neck and shoulders haven't been the same. I have indentations in my forehead where the botox injections were given.

This past week, I have been dealing with the worst migraine. I normally get migraines on the left side of my head. This one has been on my right side. It has been a beast that has set up camp. Today it is so bad. Intense throbbing, pulsating, bounding and stabbing pain. I can hear the heart beating throughout my body. I can feel the pulsing sensation between each and every tooth, in my tongue, everywhere in my body.

My vision is blurry. I have been running a fever. I called the infusion center to see if I could go in for migraine cocktail. They are not comfortable with me going in, because last time I was there, I started having seizures and had to be transported to the ER, and I bought myself an overnight stay at the hospital. The charge nurse called my Neurologist to see how he felt, and he said that he will call me. He doesn't feel comfortable with it either, until he does a work-up. So, my husband had to come home early from work.

My GP is flaring up. Having the hardest time swallowing pills. Everytime I do, it feels like there are razor blades stuck in my throat. Putting a message into my primary care doctor as well.

POTS is also flaring, which wipes me completely out. I can barely walk to the bathroom. I am having a hard time walking right now. My legs are so tremulous. When I walk down stairs, they shake so bad. The best way to describe how I am walking, is by comparing it to a puppet. It feels like my legs are loose and wobbly and a puppet master is trying to help me walk. I get so short of breath, just getting out of bed.

I have been having to  straight cath myself a lot this week. Which is a bummer and a real set back. Makes me so sad because I had high hopes that is was getting better, because I haven't had to cath in almost a month. I have had to cath over half the time, this week.

Had this fever all week. They still don't know the cause. I have had a work-up with infectious disease. They think it goes along with all the other auto immune issues.

I'm really struggling. I am sorry to complain.I have a very important wedding that I have to go to tomorrow. I know that things will get better and this too shall pass, but man! I hate how everything went kerplunk at once!

2015 Off To A Busy Start

I started 2015 out by getting round three of Botox injections for chronic migraines, going to my primary care physician for my monthly check-up and going to the rheumatologist. The good news is, I do not have Primary Sjogren's Syndrome so I do not have to begin immunosuppressive therapy. The bad news is, we still do not know what is going on. That is ok. I'm not giving up.

I have been consecutively losing weight for the past few months without an exact reason why. I lost six pounds from my appointment one month ago. My PCP said my BMI is right on the cusp of being too low. We reviewed my diet, I am eating all of the right things. My gastroparesis is so unpredictable and has been flaring up a lot lately. When GP is flaring, I pretty much know what foods I can safely eat, but even then I am not guaranteed. I do not get really nauseous, I just spontaneously vomit with only a second or two warning. If I overeat at all, it all comes back up. I listen to my body. When it tells me it is satisfied, I stop eating. I've been eating baby food to get more nutrients from vegetables in smaller portions. I am not sure why I am losing so much weight. My eating habits haven't changed from November to January. My PCP says I should try to find a favorite junk food that I can tolerate, and eat that because I need more fat and calories. I have lost over 30 pounds in the past 6 months. Below are a few pictures that I took about three weeks ago when I weighed a little more than I do now.

Sucking in to show the difference.

My yoga pants are not supposed to be baggy.

 The weight loss concerns me, especially because I am not trying to lose weight. I wish I knew what is causing it. I hope that it is just a really bad GP flare and things will even out once things settle down. I am not starving myself. I am not trying to drop weight. I think I look unhealthy. In these pictures, I am 15 pounds below my baseline weight. When I was really sick with GP in 2010, I only dropped a few pounds below my baseline weight; nothing like this.

The medical team told me I have had gastroparesis my entire life and they do not know why. I really am a medical mystery. The rheumatologist said she has been very intrigued by my case, because I have such a fascinating, difficult illness. She just wishes she knew what was going on exactly and if there was a way to treat it. We still don't know if all these illnesses are connected or if they are occurring independently of each each other. Either way, I keep on fighting and try to remain brave.

I continue to have seizures and "seizure like" activity. I have to use my cane for my right legged weakness. My right leg trembles if I stand and put any pressure on it. I am still determined to be as independent as possible. I am struggling but I keep the smile on my face. I am grateful for each new day that I have. I am not giving up hope. I cherish the moments. I know there is a reason why I am going through all these trials. I know there are so many people out there who have it so much worse than I do. I try not to complain too much, if I do, I apologize. I do have days that are better than others, but each new day is truly a gift for me.

I am so grateful all of my family and friends that have stood by me and helped me through all these battles. Every little thing helps. Thank you so much.

 I made the decision  to be more open about my struggles, not for pity or sympathy, but to help raise awareness and educate others. This has taken a lot of courage and bravery to do this. Originally, migraines were my biggest issue, as time has gone on, I have been blessed with other challenges as well. Sharing my story, my ups and downs is very therapeutic for me. I started my Facebook page and my blog after much coaxing, begging and support from my little girls.

https://www.facebook.com/amberandhermedicaljourney?ref=hf

I had no idea my page would grow the way that it has, and I am so grateful for all the supporters. I am just 10 likes away from 900 supporters. This is huge for me! I remember only a few months ago when I was wishing my page would get at least 50 supporters. I couldn't have done it without all of you and I thank you for helping me and supporting me along my way.  My invisible page helps me in so many ways. I draw so much strength and courage from others fighting a similar battle. My goal is to help people any way that I can. I hope that by sharing educational articles, videos, memes, personal experiences, etc. that people will have easy access to some educational material. I want people to know that we are all suffering our own battles that nobody even knows about, so we should treat everybody with love and kindness. I want to help make a difference in this world, even if I make a difference to only one person.. As I find ways to help myself, I hope that in turn I am in someway helping others as well.

Savi and her migrainess

My daughter, Savannah (Savi), has been getting quite a few migraines the past three weeks. She has missed six days of school since the Thanksgiving Holiday. I am really worried about her. She and my younger daughter, Mallory, have both experienced migraines, but they are usually few and far between.  

Savi had a really bad migraine on Thanksgiving, so we ended up staying home for the day.  Each migraine has presented in the same way. She starts with nausea in the middle of the night and then around 5:00 A.M. or so, she will wake up with a really bad "headache". She describes it as though sometimes is stabbing her left eye and then causing the left side of her head to throb really hard. She had built a fort for her to go into and sleep when she was fighting the migraine during the day. The light and noises really bother her. Oh, how it breaks my heart to see her suffer, only because I know how miserable it can be. I would take all of her pain from her if I could. 

We went and saw her Pediatrician last Thursday. Dr. Conover would like her to get an MRI very first before she becomes a little more proactive in treating the migraines. Dr. Conover and I talked about possible triggers: the stress of having an ill Mom, hormones, body changes, conflict with friends, stress with school, to name a few. After great discussion, we felt that it was in the best interest for Savannah and Mallory to begin weekly counseling sessions with a therapist. Our goal is to see if there are specific triggers that we can eliminate. I'm hoping that the therapist will be able to help Savannah as well. Maybe he will be able to help figure out why she is all of a sudden getting so many migraines. The last night I want is for Savi to end with Chronic Migraines like I have. Oh, it pains me just to think about it. Her pediatrician is awesome. I am hopeful that as we work together as a team, we will help learn the triggers  and get effective treatment so that she will not have to battle migraines so frequently. 

I hate watching her suffer. On the bright side, I am very educated in migraines, so I hope that I will be a good asset for her. Please keep her in your prayers. Oh  how I hate that I passed this dreaded disease onto her. I would take it all away from her in a heartbeat. 

Please pardon any spelling or grammar rules. My eye sight is very blurry right now, so I am having a very hard time seeing what I type. Please be gentle with me. Thank you all for your love and support.

Savi & Mallory Winter 2007

Savi & her former puppy, Cher. R.I.P. Cher. 12/25/10-7/13/2014 We all miss her, but Cher was Savi's special dog, and she is just grieving desperately for Cher.

Savi took my phone hostage and was doing selfies. I love this pic!

I am praying the MRI will be clean and we will find an effective treatment plan. I love my little girl so much, and I don't want her to suffer anymore than she already has to. Thank you.

 

Allodynia

Allodynia and I know each other really well. I had to shave my hair because the tickling sensation from my hair brought me such excruciating pain. My hair literally hurt to touch it. I've never felt anything like it. I was losing a lot of hair. I would wake up with clumps of my hair on my pillow and I would lose hair when I showered. It got to the point where I could tolerate firm touch, like from a hat or scarf, but I could not tolerate the tickling sensation of my hair touching me anywhere. I would cringe and cry and want to crawl out of my skin. I debated for quite a while about whether shaving my hair off would be beneficial or not. I decided to go for it. My daughters strongly encouraged me to shave it off because they were hopeful that it would help alleviate my pain. I shaved my head over three weeks ago, and I do not regret it. It has made a huge difference in my comfort and pain level. Instead of typing a lot, I will let you watch the videos and you can read the small article about allodynia below. Hopefully, the article will help you understand allodynia a little better. If you have any additional questions, please leave them in the comments, and I will answer them to the best of my knowledge. Thank you.

http://www.achenet.org/resources/allodynia_when_touch_hurts_but_shouldnt/

Introduction and explanation as to why I have decided to shave my hair. 

Part 1 of shaving my hair.

Part 2 shaving my hair and teaching Mallory how to use the clippers. I feel bad because I moved a little too much for Mallory while she was shaving my hair. I apologized. I will be a better client next time. Lesson learned.

Conclusion of me shaving my head. Shared my thoughts on living with chronic illness and pain.

Did a little slide show of finished product.