Summertime..

Hello all. I’m sorry I haven’t written in a while. Things got busy and stressful. So much has happened in the last two months. The heat here is making things extremely difficult for me. I’m trying to stay cool, just not always easy!

My son graduated VPK!!!  I’m such a proud mommy! I’m not going to pretend that I didn’t tear up, because I did! It was such a special moment in my life. I rested for days, just so I could go. We had some rough moments during, but I made it through. He smiled so big when he saw me! He’s my biggest joy in life.

Mathew @ VPK Graduation 05/2014
Mathew @ VPK Graduation 05/2014

 

After school was out, we decided to spend some time with my mom in Tennessee. My mom drove the entire way in one day, 12 hours. It was so hard on me, and I ended up sleeping for nearly 2 days after to recover. It’s quiet and peaceful at my Mom’s. During that time we had an appointment with my Electrophysiologist in Virginia. I was diagnosed with POTS, and told that my HR is still out of control, and the my Atrial Tachycardia episodes are becoming more frequent. Yay! Though he did decide to start me on IV saline therapy to help.  After that we returned to my mom’s in Tennesse, to relax and just spend time together.  I ended up having to go to the doctor there for an emergency. My jaw had popped out of place, and the tendon was swollen and causing pain. The doctor expressed his concern over my TMJ, the severity of it. So I have to add another doctor to the ever growing team of doctors I see.

When we finally got back to Florida, I had a follow up with my neurologist. Yes, I went back to Cleveland Clinic. She agreed to do the infusions, and put the orders right in, even decided i’d get a picc line placed. Again.. Yay me… Not too long after that appointment I had to see my gastro. We had to change all my meds, and diet, again. My GERD is still uncontrolled, and i’m still getting sick when I eat. I’ve started the new medicine, but haven’t noticed any change. 😦 We are concerned I will have to eventually get TPN. I’m hoping to avoid that.

Finally the day came to get my picc line. Nervous doesn’t even begin to describe how I felt. I was terrified. I cried, was angry, and then resigned. I decided it’s just another thing i’ll have to adjust to in battling this illness. As long as I fight it, i’ll never give up.  The nurse that did the picc line was great. She really put me at ease with explaining everything. So without further ado… Here I am with the picc line! To say there was some pain and discomfort would be an understatement. It’s taken some time to get used to it. I’ve now had it for nearly 2 weeks, and sometimes I forget I even have it! lol We’ve decided to the the saline infusions at home. Which is comfortable to me. My nurse is amazing, the entire agency is amazing actually!! I’ve done one infusion already, and what a difference it made!! I’m hoping after the 4 week trial period we move to everyday, or a few times a week!! Unfortunately though, I’ll be getting a port.

Picc Line!!
Picc Line!!

 

We’ve had a few bumps in the last few months. I’m still trying to get answers on why all this happened. I know I may never get them, but i’m still going to try. I’m still working on being positive, and being the best mother I can be. I’m hoping to make a difference in the world. I want to inspire others. I want my son to know my love for him. I want my family to know how much their support means to me. How much my friends have helped me. I’m not losing focus on life, nor am I going to give up.

Stay fighting, and surround yourself with positives. 🙂proverbs 3125

Words are powerful..

words

 

Since I’ve gotten sick I’ve heard my fair share of judgement and criticism. It’s never really bothered me before.

My family is divided on my illness. My mom wants me to move near her so she can help with me. My dad thinks I should stop all my medication and exercise, knowing I can pass out at any minute. I’ve completely changed my diet, lost weight, and have difficulty tolerating food. But to my dad this is just something exercise can fix…How? How would it help if I can’t even get the nutrients I need?

Words..people use them knowing the power they hold. I’ve been to Vanderbilt, I’ve been to Cleveland Clinic, Johns Hopkins. They all agree something is causing my problems, they all agree I have abnormal test results. That I have small fiber neuropathy, autonomic dysfunction, chronic migraines, fibromyalgia, IST, NCS.. But you know what?? Those don’t define me.  I’m more than my illnesses. If he became too angry, or depressed in seeing that, that’s his problem. I could only fight his darkness for so long on my own.

So I say to you. Watch your words, for they are powerful. They can bring love, sadness, and anger. Love.. happiness. Let’s focus on our words bringing those out in people around us.

proverbs 3125

Feb to March….CRAZY!!!

Hello my dear readers!!! I’m sorry for the time in between posts!! I started having a difficult time, and just became withdrawn for a while. Never fear though, I’m back!!!

February was a difficult month. I was sick with bronchitis for what felt like forever! My son became sick, My energy levels were non existent. Just rough. Then we eased into March…and it hasn’t been much better!!! LOL But that’s like for those of us that are chronically ill, isn’t it??!! So here’s some updates!!!

On February 10th I had my disability hearing…..And the judge ruled completely favorable for me. He was very thorough and understanding. I was incredibly bad that day, having already fallen twice at the Social Security Office, and cut my leg as a result of landing on something. I had a migraine, and it just wouldn’t go away!! The pain was also at it’s peak. I was in tears by the end of my hearing, which lasted 1.5 hours. My lawyer was great at helping me stand up and sit when I needed too. I nearly fell a few times, but he caught me. So I walked out of the hearing, well more like limped and half falling, with a sense of victory!!! The judge said I would get Medicare starting June 2015. That’s a relief, because my insurance payment every month is awful!! So that’s one good thing out of February!!!

My son experienced his first Valentine’s Day at school. He was so excited!! We did the little Valentine’s Cards and I made him write out the names of his class mates. Also picked on him for liking a girl. lol He got so much!! The kid did well!! Haha

I submitted my records to Johns Hopkins for second opinions with neurology, headache center, and was denied due to the dysautonomia. How can they just decide not to see me. I keep explaining I want a second opinion on MS and Lupus.  I was however able to schedule with Rheumatology and my Heart doctor!!! So there’s a positive, on June 9th, I’ll be in Baltimore…again…

March came and with that my Appointment at the Spine Center at University of Miami with a neurosurgeon. My mom decided to fly down here to go with me. So on March 10th we headed down to Miami. It was an awful drive, and my back and hips were hurting so badly from being in the car for so long. When we saw the doctor, I was very open and honest with him..which I don’t think doctors want at all!! I didn’t even get to see the neurosurgeon, I only saw a neurologist, who knew nothing of Dysautonomia. He dismissed our concerns about the spots on the Bone scan saying they’re nothing. Dismissed my Dysautonomia diagnosis, and questioned me relentlessly about things. I was in tears by the time I left. I couldn’t lift my legs up, and flex them they way he wanted, he acted as if I was just pretending to not be able to do it!! He then checked the trigger points and I was screaming from the pain!! He agreed with Fibromyalgia..Really?? Out of all my diagnoses that’s the only one you agree with??? My hip was out of alignment, which it often is these days, my back is in excruciating pain, as is all my joints..I hate walking because of the pain..What does he suggest??? Savella…and behavioral therapy and biofeedback….I nearly slapped him. I’m so tired of doctors labeling those that are chronically ill. I’m so tired of being treated as sub-human!! I’m a person, with a real disease and real pain!!!!  I left not any closer to an answer as to why my hearing is so affected, or anything else.

My internist is absolutely amazing!! He was upset at how I was treated. He is educating himself on Dysautonomia so that he can help me! He referred me to his colleague, a neurologist. He said they spoke, and she feels she can help me. So I see her March 25th. I was also referred to a hematologist due to some abnormal bloodwork. My internist really wants to figure all this out!! The hematologist was just as great, however the two hour wait was not. He ordered extensive bloodwork that day, and it was done right there!!! He suspects a platelet dysfunction.. like I really need anything else??!!!! LOL  He is also concerned with the hemangioma on my c4 and the Sclerotic lesion on my hip.  He’s curious why these things are happening.  I go back in a week for the results! Should be interesting!!

On a more positive note I registered for the Dysautonomia Conference that’s being held in Washington Dc July 11-14th!!! I’m so there!!!  I’ve also decided to spend the summer with my mom at her house in Tennessee. My son is extremely happy!!!

My son…oh bless my son… He’s reading!!!!! I’m so proud of him!!!!  And his birthday is coming up so I’ve been planning that.

I turned 28 yesterday..My dad took me out to dinner. Luckily I was able to eat. I got a cute new shirt , The Avengers, and a Hello Kitty bank from my son. According to my son, i’m now a cool mom for having that shirt! So I wore it to dinner. 🙂

My AVengers T-Shirt and Hello Kitty Piggy Bank!! Yes my puppy photobombs!!
My Avengers T-Shirt and Hello Kitty Piggy Bank!! Yes my puppy photobombs!!

It’s been a crazy few weeks, but such is life!!!

I’m really going to try not to get so withdrawn again and stop writing!!! I love to write!! Have fun and be good, till next time!!

I-am-stronger-than-you-ever-thought-Id-be

A cold..Turns into…UGH!

 

Hello my dear readers!! I’m sorry for the lapse in posting. I became ill with Bronchitis, and it is just kicking my butt! I ended up in Urgent care on the 24th, and then a week long battle to get antibiotics occurred! I finally ended up going back to Urgent Care this morning. They got me right in, and gave me a shot of antibiotics! At last!! The Nurse Practitioner I saw was great. She really listened and wanted to help me!

 I Ended up in the Emergency Room Last Thursday due to a migraine, my right eye was completely swollen shut, my left eye would barely open! That was even less fun! The doctor treated me like an idiot, and wouldn’t even listen to me about my having dysautonomia or what medications are dangerous to me! Needless to say I will not be going back to that hospital. While I was at the hospital, I was given Toradol and Zofran. I was more nauseous after receiving the medications than I was before! Not only that I seemed to have some reaction to the Toradol and ended up staying awake for over 36 hours!! I was so tired, but I just couldn’t fall asleep!!!

insomnia-1

So in my journey to help with my congestion I decided to take Nyquil the other night.. No… Bad Idea!! I had a horrible reaction to it. I was so scared. Oddly enough I only took barely half a dose! I became so hot, and uncomfortable I couldn’t sleep. Terrible! The doctor this morning said that I shouldn’t take any decongestants because of my Dysautonomia and my arrhythmia. So I stored that in my  memory bank…Nyquil Bad!!

Nyquil...Bad!
Nyquil…Bad!

So, I’m home resting, eating crackers, drinking gingerale..craving some actual food!! Hopefully these antibiotics knock this out of my system. Tomorrow I see my new neurologist for the first time, and an Internist I’m hoping to make my PCP. I’m hoping to make it a great day, or at least a so so day. My migraines are awful, and I feel like I always have a headache! Maybe someday I will be pain free and headache free!

Have faith, and never give up!!

Never-lose-hope

Holidays..and the stress it brings

keep-calm-it-s-christmas-eve-9

So… it’s Christmas Eve…FINALLY!!!! I spent Sunday making Sugar cookies with my son. I was exhausted by the time we were done, but to see the smile on his face was well worth it! I sat in my walker and wheeled myself around the kitchen. We even made homemade frosting! Now..I’m not a great baker..I rarely bake..but these turned out pretty well!!! Though, I didn’t say they’re pretty..lol.

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The stress of Christmas shopping, wrapping the presents, dealing with family and then the cooking.. So much goes into it. Which in turn makes me feel worse health wise. Though I wouldn’t trade it for anything. Seeing the smile on my son’s face is all worth it.  I’m falling a lot more, dizziness is worse. Had a really bad fall last night, I’m trying to recover from.

I’m trying to teach my son that Christmas is not all about presents, that it’s about family, faith, love. I remember as a kid, my dad got laid off from work just before Christmas. We lived in West Virginia, so it was wintertime. Imagine, December in the mountains. We had a choice, presents or food and firewood. My parents chose to put food on the table and keep us warm. On Christmas morning a knock came on the door, it was our neighbors, members from our church. They had a ham, casseroles, bags of presents, firewood. To me, that was still to this day the best Christmas I’ve ever had. It was the embodiment of what Christmas is. Family, Community coming together and celebrating our Faith, our love for one another, helping each other.  If we did more things like that just for one person, it could mean the world to them. It makes a difference. The world needs more of that, in my opinion. More Faith, more compassion, more love. 

Yes I have something incurable, yes it’s taken so much from me, but it hasn’t taken my faith, or my strength, or my love, or my hope. These are all things that we should hold on to. Even if I do have a brain tumor, I’ll still fight. Because fighting is worth it, I have so much to live for.  People often assume acceptance means giving up, to me it’s not the same. I’ve accepted this life, but in no way have I given up. My eyesight deteriorates, my hearing is going, my legs barely function, but I still fight. I’ve accepted this is my path, but I’ll fight like hell to live. I can still live while being in a wheelchair. I can be a mom, a wife, a daughter while in a wheelchair.  Acceptance is not about giving up, it’s about letting go of the anger of why me, why this, and accepting life as it now is, and embracing it, and using your strengths in a positive way.  We have to accept that our family will never fully understand what we go through, that no one will except those that suffer the same illness. Accept that they will never understand, let go of the anger, of the guilt, and be at peace. All you can do is express yourself to them, and educate them. My family doesn’t understand, but not understanding, doesn’t mean they can’t be supportive!!!

Christmas is about family, Faith, love. Take a moment this Christmas to let your family know how much their love and support have meant to you. For me, it’s meant the world.

REL567Faithstrengthhopelove

Let’s Laugh

 

Challenge Accepted

Wanted to share something to make you all laugh! . I am a redhead..shocking i know.. I mean like Ariel from Little Mermaid Red..I’m a natural brunette, but one day my boyfriend made a joke how my personality is that of a redhead..I was like “challenge accepted!” So, I headed off to my wonderful friend that has done my hair for years! She was very hesitant but we did it..and he was speechless the first time he saw it.. Now i’ve changed the shades of red, dark, auburn, now Ariel Red..I think that’s my favorite. Well… I use John Frieda Radiant Red…and I get pissed off EVERY TIME! The tube sucks! It’s not easy for me to get the shampoo out at all. I’ve dropped it, thrown it and accidentally poured it on bottom of shower and fell and hit my head.. LOL (I can no longer stand in shower, I fall too much, not shampoo related though :p) So… I finally had had enough! I emailed Customer Service of John Frieda Explaining to them that while their product is great the packaging sucks. I said that it is not easy for those with problems gripping items in that shape or lacking strength. Why make the shampoo so difficult to get out?!!!! It’s just stupid!! I know why not switch products you ask..well.. I’m kinda of a creature of habit, and it keeps my hair so shiny and pretty. 🙂  So we’ll see what happens!!!

 

Ariel

 

Radiant Red Tubes

 

Damn You Radiant Red Shampoo Tube!!! I love you and hate you!

I’m back!

Hello All!! Sorry for the delay, I was going through a rough time. I’m working on bringing more positive actions and feelings into my life. This blog helps with so many things. I don’t want it to be all negative. I have bad days, but I am trying to work through them.

For my first new blog I’m taking it into a new direction!

Something I really love to do is write. I love writing. I also love reading, and cooking. Though cooking is sometimes difficult, I refuse to give it up! My goal from now on is to write about everything, and focus more on the positives in my life, than the negatives! 🙂  I have worked towards finding my faith again. I find it helps me find peace, and calmness in dealing with this disease.  In recent days I’ve taken a trip to Colonial Williamsburg with my son. He had so much fun! It was incredibly challenging, but you know what?! I did it!  We went for two days. I took my walker, and we sat whenever possible. We had so much fun. It was a very needed trip for us. I also spent time with my boyfriend, and it was so special. .. I feel so blessed that this man loves me so thoroughly to take that step with me. We’re also working on purchasing a house together! We’ve also been thinking of a few ideas for him in regards to work. He’s excited about future changes as am I. Together we’ll make it happen.

Most wonder how I stay positive. It’s not always easy, but I find it necessary to try to think as positive as I can. Yes I have this debilitating disease, it’s taken my independence, my legs, and some of my hearing, but it hasn’t taken my faith, my strength or my love. I’m still here, still living and that’s what I need to focus on! A friend of mine told me a huge surprise. Her mom has a few electric scooters, and they have offered to give me one. I was in shock, I cried. I told her I couldn’t repay her. She said my friendship, and love is all I need to give her.  So now I will be able to go on walks with my son! Go to theme parks, and do so much more! I’m truly blessed with my friends and loved ones.

As for you my dear readers. When life seems dark, light will always shine. You must simply look inside yourself, or a loved one for that light. Don’t let darkness overcome you!

focus-on-the-light

Been a while

Hello all. I know it’s been a while since I lost wrote. Things are still incredibly stressful. Living here, at my dad’s has been feeling more like a prison sentence than anything.  I just feel like there is no support here, and just constant stress and tension. Which causes my son to act up. I’m just so over it all.  Receiving a new diagnosis was even more difficult. Now I have POTS, postural orthostatic  tachycardia syndrome. I’m learning to accept this as well.

I’ve had good days, but mostly bad days. The pain and brain fog never really goes away. The heat intolerance and inability to sweat, I sometimes fear could kill me. Though here, living in Florida, what am I to do??? My boyfriend has found a bed that has a cooling system built in.. I’m currently working with my insurance to see if it could be covered by my durable medical equipment. If not, I’ll have to pay for it, but at this point I’d do it. I’m getting too hot to sleep at night, too hot to the touch. Though my boyfriend is always there calming me down, keeping me positive.  I’ve learned that through all this, he’s a great man, and amazingly supportive boyfriend. I’m truly blessed to have him. He keeps me positive, he reassures me that when I end up in a wheelchair he’ll be right there.  We’ve been told by doctors I shouldn’t be driving. Bye bye freedom

I pray things get better, if not, I have the love and support of my family, my boyfriend and my friends.

Ups and Downs

The past few weeks have been difficult. I’ve had my ups and downs. My biggest up being working things out with my boyfriend. I’m happy, and hope things continue on the path that they’re on. He’s been extremely supportive of my treatment and going to see new doctors that can help.

Today I had a consultation for physical therapy. It was a let down. The Physical Therapist felt at this time, aggressive therapy would not benefit me, and could potentially hurt me. As we don’t know the exact cause of my muscle weakness, how can we treat it? He gave me some home exercises to try, and see what happens. I will give it a go!!! I’ve finally accepted the fact I may be wheelchair bound, but what hurts me the most is my parents refuse to accept it. They push me and push me, i’m tired of just pushing myself so much to the point i’m in constant pain and constantly exhausted. I’ve begun having major trouble eating, and going to the bathroom, but not once did anyone suggest going to the hospital, after my doctors had mentioned it to be necessary. I just sometimes feel so alone, and upset. My friend Stephanie has been absolutely amazing through it all, as has my boyfriend. They both have truly been blessings. They are there to talk when I need someone, and to just be a friend, or confidant. I’m truly lucky for them.

I was referred to Vanderbilt, my dad was annoyed, he thinks i should take time away from the doctors to see if I get better… NEWSFLASH I’m not getting any better!!! I’m getting worse!!!! I can’t get into Vanderbilt until November, but I am on the waitlist. I just hope something opens soon. I hope my family becomes a little more supportive, because lately they really haven’t been.

I’ll stand strong though. I’ll keep fighting on, because i’m not going to give up.