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.

Gastroparesis AKA GP

So, after doing every GI test known to man, I was finally told that I have Gastroparesis. The medical team was blown away because they had never seen a case like mine. They said that it looked like I had had it since birth. They said they had never seen a stomach that had been "rigid" an entire person's life. Yep, that's me! The Statistic! Which, when they explained it to me, it totally made sense. 

Growing up, I ate like a bird (still do). I am the slowest eater. I get full after a few bites. As tempting as it would be to overeat, I cannot. If I eat even one bite too many, it comes back up way too quickly. (I apologize if this is TMI or kind of gruesome) I was accused my entire life of having an eating disorder because I didn't eat much and because I vomited if I ate too much food. I did not have an eating disorder my entire life. I did develop an eating disorder my sophomore year of high school because I was so depressed. We moved my sophomore year. We moved from a very small town to a very large city. I knew nobody in the school. I was so shy and quiet and making friends was not an easy feat for me. I felt so out of place and alone. I developed an eating disorder because it was one thing in my life that I could control. My eating disorder was short lived because I had an amazing psychology teacher that helped me through it. Looking back now, I don't know how I made myself throw-up. I hate throwing up.

When I started having all of my stomach issues, I thought that my short bout of eating disorder had caused long term damage. When I asked my Gastroenterologist if this were the case, he told me absolutely not. Which is good I guess, because I carried so much guilt already.

After eating the radio active eggs and measuring how much food I had left at certain intervals, it was determined that I have delayed gastric emptying. My stomach is very rigid. It is paralyzed. I am limited on what foods I can eat. I pretty much live on the BRAT diet. Bananas, rice, applesauce, and toast. I have to eat bland foods or I will puke.  I never know what food I am gIt an happen at the most inopportune time.

I have been lucky thus far and have not needed feeding tubes or TPN.

GP is very painful. I get severe stomach cramps. I keep a warm rice pack on my abdomen as much as possible. Weight flucuates a lot throughout the day, and I can get very bloated. I can start the day with a flat belly weighing 108, but by the end of the day, I can look like I am 7 months pregnant and weight 113. I have not found anything that is effective against all the bloating, that doesn't make me sick in the meantime.

Quick overview, Gastroparesis (GP) affects the digestion of food. One has difficulty absorbing essential vitamins and minerals. People with GP, have delayed gastric emptying. Food can sit in my stomach for 2-3 days. GP affects the peristalsis. Pacemaker are now being installed in the stomach to help with gastric motility. My GP has not gotten to that point where I need to start worrying about that. Gastroparesis is a scary thing and it can totally control ones life with the nausea, bloating, stomach cramps, puking, and diarrhea to name a few.

Thank you for taking to time to read this.

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.

Dance It Out

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What next?

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.

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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Created September 2, 2014

Amber Gibb Carter

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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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Rheumatologist appointment pointless, but I won't stop fighting!

                          WARRIOR IN EVERY SENSE OF THE WORD!

I am a WARRIOR that refuses to give up!

It's NOT just a headache!

So, I had posted a few days ago that my Rheumatologist appointment had been moved up to July 21 instead of August 5. They changed the appointment late Friday and my new appointment was first thing Monday morning, so the appointment was pointless and a 2 1/2 hour waste of time. The Infectious Disease Doctor still had all of my previous scans because he was reviewing them all from 2010 to present, to see if anything jumped out. The Rheumatologist didn't have my records, so he basically had no idea why I was referred to him in the first place. He's like "am I supposed to figure out the fever"? No. Told him about my appointments with the Neuro-Opthamologist and MS specialist in January, 2014 and how they they I had Sjogren's Syndrome. The Neuro-opthamologist noticed that my eyes were very dry, my mouth was dry, and my lips were dry and cracked. She did a Schermer's Test which came back positive (Schermer's tests to see if you made adequate tears or not. They put filter paper in your eyes for 5 minutes, during which time your eyes remain closed. The test is positive if the paper is still dry or barely wet). Since that test was positive, I had to go have blood work drawn, to test for Sjogren's Syndrome. The blood work came back positive. 

I had an appointment with an MS specialist towards the end of January 2014. I had an appointment with a new neurologist before seeing the MS specialist. We debated keeping both appointments, but my PCP, husband and I decided it would be in my best interest to keep appointment with both of them.

I would have a neurologist to see, since we were unsatisfied with my previous neurologist. This neurologist was replacing Dr. Riggins, whom I fought like hell to get into, but we received shocking news that she was no longer there when I went for nerve conduction studies. They recommended Dr. Skuster, and I said no thank you, we were very unsatisfied with her. So, they scheduled me with Dr. Hoesch. I was very impressed with Dr. Hoesch and I am so happy that I kept my appointment with him. He said he didn't think I had MS and couldn't understand why the Urologist told me I had MS. He said that is a pretty scary diagnosis to throw at somebody without any definitive cause other than the inability to void by myself. Because I have to straight cath on a pretty consistent basis,the urologist (whom I was not impressed with, especially since he was chomping his gum during the exam and throughout the cystoscope procedure), (and for those that don't know me very well, I HATE GUM!! I hate the chomping, the popping, the annoying noises, and never mind the sticky, obnoxious mess that it makes). He said I had atypical MS. 

When I met with Dr. Hoesch, he asked "what the heck is atypical MS?" I said I had no clue. Dr.Hoesch impressed me, and I can be pretty critical of doctors. He impressed me, because he not only listened to me. He validated me. I told him I didn't want another drug to try as preventative as I had tried several and I hated the negative side-effects. I also told him that I also know all about medication over-use headache and I did not medicate for every migraine, because I didn't want to get into the vicious cycle of fighting rebound headaches. He encouraged me to see the MS specialist so we would know for sure.

I went to the MS specialist, Dr. John Foley and he couldn't rule out MS. He said I was displaying signs of MS and Sjogren's syndrome. He wanted me to see a Rheumatologist right away so that we could rule out if I had Sjogren's or MS. He told me to come back after my appointment with the rheumatologist. Apparently, Rheumatologists are hard to come by in Utah. There are very few and have a long waiting list. I had one office deny me because they didn't think my case was crucial enough. So, it only took me 7 months to get into a Rheumy.

When I went to the appointment with the Rheumy on Monday, I felt like I was hit with a brick wall. After our appointment, I seriously just wanted to curl up in a ball and cry my eyes out. I felt so defeated. I get the feeling that I am not valued and these specialists could care  less that I have lost so much of my life battling all these issues. He told me that he hoped I didn't have Primary Sjogren's because it is more aggressive than any form of cancer. Inside, I am falling apart, but trying to maintain my composure on the outside. When he did his exam I was fighting the tears and was trying to climb off the table, because it hurt so bad when he was touching me.

He ordered a bunch of labs. I have no clue what labs were even drawn, because I didn't get to see the paper. He blew me off when I told him that in the past 6 weeks or so, I had been in so much pain. I told him that I literally am in tears on some days because it hurt so bad to even walk. I told him the back pain was getting worse. My pain is not alleviated when I lay down in bed. I felt defeated. He didn't even want to schedule a follow-up visit. What the hell? Am I supposed to live in pain and suffer?

He said maybe my meds were contributing to the dryness. I told him I had been weaned off of all of the medications that can cause dryness. He said he could give me another drug to help with the dryness, and I declined. I told him I was doing just fine with water, eye drops, and rinsing with Biotene. Sometimes I don't get the medical world. They blame the drugs for causing the problems, and they want to give you another drug to combat symptoms of another drug. No thank you. I don't want all these damn meds. I want to get to the root of the problem, not mask it with another drug.

So as of this moment, I have no f-ing clue where to go from here. I just know that I am tired of being in pain. I maintain my brave face so my husband and girls don't worry. I do my best to be happy and make ever lasting memories with my family. I don't want to have a pity party. I don't want to complain. I want to laugh and smile. I love nothing more than to bring a smile to somebody's face. Smiles are so beautiful. Smiles can change a bad day into a good day. Smiles are contagious. Smiles are free. Why not hope for the best and smile? I refuse to let this get me down. 

Next week, after the holiday, I will touch base with my PCP and see what he suggests. I refuse to give up. I will fight, be boisterous, annoy the hell out of the doctors until I get them to take me seriously. My PCP and neurologist are amazing, it is all the other specialties that could care less about me.

I feel defeated, but I have not lost. I just need to fight harder, and introduce "Pregant Amber" (no I am not prego,if you are curious, ask and I will explain. :)

My two beautiful daughters who are my biggest cheerleaders along side my husband.

Sometimes the tears just won't  stop!

You know my feelings about dance, I love this Meme.

No matter how difficult things get, I refuse to sink and let the chronic life-style bring me down! I am a Warrior!

Oh! The pain?

There are days, like today, that I have a strong dislike for my body. This afternoon, the entire right side is my body went dead numb from my  head down to my toes. Made me a bit nervous because I have never experienced, an incident  where entire side of my body went numb. Scared the hell out of me. Luckily Rick was here. He came down. I was able to speak normally. My smile was equal. My right hand was a little cooler to the touch, but otherwise, all was well. The episode lasted about 20 min, then it turned to pins and needles numb.

I experience numbness with migraines frequently, but never have I had an entire side go numb.

I have been having severe, excruciating pain when I walk. It's like my bones are grinding. Every time I put a foot down, the pain is unbearable. I cry. Oh my goodness, this is all scaring me. I wish I knew what was going on.

I am tired of being the complicated, puzzling zebra. I want to be normal and enjoy my life like everybody else, even just for a day.

I have so much fear of the unknown.

I have an appointment with a rheumatologist in August, so hopefully, we will be able to figure out if a lot of this is in fact caused by Sjogren's or if there is more to the puzzle.

I continue to take each day as it comes. I do my best. I will never give up.