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 I started having a difficult time, and just became withdrawn for a while.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!!

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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!!!

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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

First Post, New Year!!

Hello My darlings! I know I’ve broken my promise about updating more often, and I’m sorry! Though I have good news! I’ve been busy working with my financial aid office at my school to get my financial aid back. I was on academic probation, and thanks to a dis-compassionate professor I lost my financial aid last fall. Luckily I was able to get it back, after contacting the Disability Services and working with them to document my illness and get a Memorandum of Accommodations. Once that was turned into financial aid, I was approved right away! I’m so happy I can finally continue with my education! Eventually I’ll have my Masters, or even PhD!

So.. what else have I been doing?? Well, I baked bread, yes home made bread! I was my first time, and I was nervous but excited. I used my wonderful Kitchen Aide mixer and let it do all the hard work! I do have to say for a first try it turned out alright! I need a bigger pan, and to cook it slightly longer, but it was delicious!

Home Made Bread
Home Made Bread

We also went to the park and launched my son’s bottle rocket! I know, what was I thinking?! Not to worry it was a little rocket powered by vinegar and baking soda! My dad was a big help, seeing as how I can’t really pour anything into a small little bottle, so he did it! I sat down and watched my son run around after the rocket and laugh! It was a very happy time for me! I’m not able to get out much, but it wasn’t a sunny day, or very hot, so I was able to get out, and enjoy the day with them!!

Mathew and His Rocket
Mathew and His Rocket

 

Mathew and Grandpa
Mathew and Grandpa

 

After that we got a bout of chilly weather, which just made things horrible with my pain, and I couldn’t regulate my body temperature! I went from freezing to burning up! Seizures a few times a day, it was just awful!  So I ended up staying wrapped up in my jammies and Dysautonomia hoodie, and laying on my couch with my puppy!!

Me and Lillie Belle
Me and Lillie Belle

I’ve had falls, quite a few, and one really bad one, to where i’m not so sure I didn’t break a rib! Such is life for me! I’ve got my health insurance finally straightened out! I’m working on being happy and working on my book! I’ve also developed huge problems with eating. I’ve been unable to eat more than a few bites for two days now. I have only been able to drink about 2-3 oz of my meal replacement drinks too. So.. I’m starting to worry about it a little. I’m so hungry, and thirsty, but every time I eat I get so nauseous, and the pain is horrible, and no it’s not gas! LOL.  So I’m guessing it’s time to see a GI! Oh the joys of Dysautonomia!!

My Meals!
My Meals!

 

 

That’s it for now my dear darling readers!!! Until next time, I bid you a wonderful day!!

Well Done My Friend!
Well Done My Friend!

 

End of the Year Review..

NYeve 2013

Hello my dear readers!! Tonight is New Years Eve. I’m home, ready for bed. LOL. It’s been a rough few days, this is not how I wanted to end the year. All I can say is, at least I haven’t landed in the hospital!

My goal for the upcoming year is to work on getting answers for my health, or as many answers as I can. I see my new neurologist next week, and I’m excited, yet nervous! I’m hoping things go well with him. I’m also working with University of Miami Neurosurgery Department to get an appointment with Dr. Green. They’ve been so helpful.  I also hope to get a wheelchair. 🙂 And make it special, and just for me. I’m nearly completely unable to bear weight on my left leg due to the pain in my hip. I also have some silly goals I’ve set aside for myself:

 1) Get the cooling bed so I can sleep!

2) Start crossing things off my bucket list, first is to experience the Northern Lights up close and personal.

3) Get special contact lens for my photophobia.

4) See my son graduate VPK (in May)

5) Write a book.

6) Make new and long lasting friendships.

These are just a few of mine! What about you?? Have you decided any resolutions for yourself??? This year has been very difficult, and at times i’ve wanted to give up, but I kept on fighting. Just as I will next year! Sometimes our trials seem so much, too much at times to handle, but we must remember, that we can overcome so much with our family and friends at our side.  I want to help others as much as I can. To help others see that even though we battle this hell, we don’t have to let it consume us, we don’t have to let the darkness win. Let’s start this new year off right. With positive thoughts, and hope in our hearts! Hope for so many things, and people. Remember we are all battling something, who are we to judge others?? All we can do is be kind to one another, show compassion, and hope that our kindness helps someone else.

So my dear readers, as I mentioned in the last post, I’d truly like to make this more interactive. I’m working on making this an active site, and hopefully I can have that done!

Stay safe my dear readers, and Happy NEW Year!!!!!!!!

Day After—We Survived!

 

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So, it’s the day after Christmas for those of us in the US..and guess what?? We made it, we survived the stress of the holidays! Maybe not by much, there may have been some falls, some passing out, some anxiety attacks, some arguments, but we made it! Lets all take a bow, or clap for ourselves! You know why? Cause dammit we deserve it! 🙂  This holiday was definitely hard on me, I was definitely a lot worse health wise this year than I was last year. I woke up Christmas morning, knowing it’d be a rough day, I was already exhausted from not sleeping well, and in a lot of pain. My son was already up and ready for presents, but first we had to have breakfast, and open our stockings from Santa, (he’s only 4). My dad made breakfast, our traditional Jiffy Blueberry Muffins, while my son and I opened our stockings. I got my cool gear cup, I’ve been looking for, in green! It seemed Santa didn’t want me to get sick since I got a lot of antibacterial wipes and hand sanitizer, he also got my favorite lotion, which is the only one I can use now, Cocoa Butter! Also Got some Hello Kitty Lip gloss, Yes Hello Kitty! LOL. Some other stuff as well. My son of course got all boy stuff, matchbox cars, batman figurines, tattoos, minions toys, finger skateboards, and candy..sigh.. candy and my son do not get along well, we limit his candy intake to the extreme. LOL. It hypes him up so much. So we finish our breakfast, while Pop (my dad) goes through his stocking, my son is literally jumping in his seat for presents. Telling us to hurry. And yes Santa did come and he had already gone through those presents. He got a remote control truck, an Iron Man toothbrush holder thing (haha like my description?), and an outfit for school.

Soo….finally Pop finished his breakfast, and it was present time, so we all head to the tree. My dad gets me a blanket in case I get cold and a pillow for my back. And we start handing out presents for my son..This kid made out like a bandit!! LOL he’s loved. He got clothes, Duck Commander PJ’s, TMNT PJ’s, another shirt for school, Skylanders game, Angry Birds Light up shoes, and Perry the Platypus shoe, a special book I made him of his Bible verses they memorize in school, a build your own bottle rocket, solar system model to build, a rocket ship clock that lights up the room and shows pictures of the moon or galaxy on the ceiling. So much science stuff for him. He loves science so much!!!! He was so excited!  I got some sheep pajama pants, a Kinect for xbox, and a game for the kinect. My dad got some pictures for his picture frames, a journal for himself from me, and a very special gift from my son: a poem “Walking with Grandpa” we also included pictures of them together, and my son signed it. I converted it to a picture file, printed and framed it. He choked up with emotion. And hugged my son so tight. 🙂 It was all worth it.

After presents, I rested a little bit, then started an apple pie.. Yes ladies and gents, an apple pie..home made! It turned out so so delicious! My dad made a standing rib roast, rubbed with steak seasoning and horseradish sauce, it was so delicious. I also made mashed potatoes and green beans.  My uncle and his girlfriend came for dinner. It was a wonderful day with family. 

As I was preparing for their arrival I decided to shower..of course I fell in the shower and seemed to have hurt myself pretty badly. I have a stiff neck, and weird numbness/pressure along my spine, along with tremendous pain in my neck, spine and hips. Of course unbeknownst to me, my uncle and his girlfriend arrived just in time to hear me scream and fall. Oh joy. But I brushed it off and made the best of the evening! I was determined not to let it ruin the day. I found a new friend in my uncle’s girlfriend. I’m glad to have met her. We ended up talking and sharing stories of our horrible experiences with doctors. She loves my uncle very much and I’m so happy to see him so happy! We exchanged numbers and hope to stay in contact with each other! 🙂

So my dear readers, while some of us are suffering through the pain, remember there is always someone there to help you, to love you. It may be someone you least expected. Instead of focusing on the bad, let’s start looking at the good. We’re alive, we’re loved, we’re supported. In many ways we’re blessed. We may not have good health, or be rich, but we’re rich in love, and support. To me, those things are worth more than money!

Let’s start thinking about our New Year’s resolutions! I want to start making this site more interactive! I want to interact with my readers!  Let’s start working together and reaching out to each other and focusing on good, not all the bad!

focus-on-the-light

Holidays..and the stress it brings

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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

And the Results are in..Kinda

results

Ahh..Welcome back everyone! It’s another sunny day here, though a bit Chilly! So last time we were awaiting results from the CT scan…and boy did we get them!!! But before I get to them…like that..leaving you in suspense??!!

First things first.. this week my dad has had off, and he’s taken me to appointments, and Christmas shopping (much to my dismay), yes i’ve been the Grinch this year.  I’ve just not been in the Jolly mood. But I’m slowly getting there. We’ve gotten some good presents for my son! He’s going to have a great Christmas! One thing I’m excited to give him is an old Musical Keyboard my sister found for me. I know some may be shocked that’s it’s used, but you know what? He’s 4! So I’m excited to give it to him. He has one at my mom’s and always plays it, so I’m thinking he’ll love this gift! I also got him some Duck Dynasty pajamas, because I’m just that awesome! 🙂  Ok ok. Enough gushing about the Christmas presents. My mom had knee surgery yesterday, and made it through alright. I’m so happy! I’ve been trying to stay active, but the pain isn’t really allowing it. The pain in my head, neck, back, hips, legs, hands is just becoming so much .  To find out half of your Femur head is missing…wow that’s a lot to take in!!

Alright my lovely readers, now i’ll lift the suspense!  Below are the results:

CT-Hip:  Mixed Sclerotic Lesion in Left Iliac Wing measuring 2.8 x 2.1 x 1.8 cm in greatest dimension. Appears Benign, possibly enchondroma.

CT-Lumbar: Mild Multilevel loss of intevertebral disc height.  L2-3 broad based posterior disc bulge more prominent at the neural foraminal with mild neural foraminal stenosis; L3-4 mild circumferential disc bulge more prominent at the neural foraminal with mild bilateral neural foraminal stenosis; L4-5 mild circumferential disc bulge more prominent at the neural foraminal with mild canal stenosis; L5-S1  mild circumferential disc bulge more prominent at the neural foraminal with mild bilateral neural foraminal stenosis.   Non obstruction 2mm calculus in midpole of right kidney. Additional adjacent 1mm calculus cannot be excluded. Punctate calculus is also seen in midpole of left kidney. Mild Sclerosis at sacroiliac joints, limited visualization of iliac bones.

Bone Scan Whole Body-  The Thoracic-lumbar junction has a mild convexity to the left. There is  increased tracer activity to the  right side of skull.

So… I had my CT scan done December 9th, and was sent for a Bone scan which was done December 16th. Tuesday morning my ortho’s office calls me to come in. So I go in, wondering what’s wrong. When my doctor comes in, she’s talking to me, and says. “have you ever had surgery to your head, or a head injury.” I tell her no. That’s i’ve been complaining for months to my neuro of these weird headaches and pain. She takes my films and puts in on the screen and shows me right there in my brain is something, and they don’t know what it is. She said due to what the bone scan looks for and my symptoms I need a neurosurgeon, and sooner rather than later. I ask her point blank what she thinks.. She says the words I feared the most. She doesn’t believe it to be cancer because it’s not showing up that way, but she said it could be a tumor that the tracers are picking up. So, she referred me to University of Miami Neurosurgery, as it’s one of the Top neurosurgery departments and it’s an hour or so away. Problem is, I lose my health insurance Midnight Dec.31. So I sit here and wonder..If the neuro had followed up on my complaints, or given a damn would this have been found? If it is a tumor, can anything be done??? As it is now, I’m losing my hearing, and my eyesight its worsening as is my speech, and other things. So.. How was none of this found by the renowned Cleveland Clinic??? Simple, they didn’t give a shit! I should be angry, but I’m not. Anger gets me know where. I’ve been set on this path for a reason, and I’ll continue on it. With my same strength and courage, with the love and support of my family and friends. This journey is far from over. Giving up isn’t an option.

Never-give-up-hope-..

You found what, where?

 

now what

I was scheduled for an MRI and an appointment with an Electrophysiologist at Johns Hopkins on November 25.  This C-Spine MRI was important. They were checking for spinal lesions for MS. I arrived in Washington DC, Sunday night after a 2 hour delay due to a mechanical problem with my plane leaving Chicago. I was exhausted by the time I got in, as my flight was at 8am that morning. I had trouble in security at FLL, there were no female TSA officers on the floor to do a pat down, as I have a pacemaker and unable to go through metal detectors, so I waited, sitting on the floor for 20 minutes. I thought this was unacceptable.

 Once I got to DC, I was so tired I fell asleep pretty much as soon as I got to my hotel. The next morning, I was surprised with a trip through the capitol on the way to Baltimore to see the monuments. 🙂 Once arriving at Johns Hopkins we were prepared for the long day ahead. First was my MRI. Then my appt with my EP. Everything went well during the MRI. So I was off to see my electrophysiologist. He was apparently on vacation, but made arrangements to come in and see me. We went over everything. I show signs of pots, and NCS, but at intermittent times. I still have Inappropriate Sinus Tachycardia. We agreed to continue monitoring everything. If I worsen, then we will seek medication or if necessary another surgery.  We also discussed the possibility of MS, and other possibilities that could be causing my symptoms. He wanted to meet with a Rheumatologist to get their thoughts on it. And possibly schedule a phone consult.  I’m excited I have him in my corner!  Before I left the hospital I was able to get a copy of my MRI disc, and request my report be emailed to me. 

The next morning the MRI report was in my inbox. I read it and cried.  There is Disc Dessication from C3-C7, there is also a hemangioma on my C4.  Degenerative Disc Disease and a benign tumor..not what I was expecting..AT ALL!!! But you know what??!! It’s ok. I’m strong enough.I have been in horrible pain for months in regards to my neck and back. Since I got back from Johns Hopkins the day before Thanksgiving, I’ve been basically bedridden. So, today I went to see and orthopedist that specializes in neck, and spine. And again, another shock.  Today I learned I have Scoliosis, and A deformity of my femur in my hip socket, also there is a lesion on my left hip bone. He ordered CT Scans immediately.  He seemed upset to learn that I’ve had x-rays recently by my other doctor and nothing was said or done. I’m still trying to remain positive.  It’s all I can do. I refuse to let the darkness or whatever this disease is wins. I’m scheduled for CT scans Friday, and to see him immediately afterwards.  My questions is this, how was any of this missed?? Or wasn’t it???  My family is trying to be supportive, but my dad is becoming increasingly frustrated and unpleasant. SO i’ve decided to stop telling him about any of it. If the scoliosis is as severe as my ortho fears, i’ll need surgery to help me, also surgery to help fix my hip.  My dad informed me tonight that he has a curved spine, and that my uncle has scoliosis. He blames it on the way I walk. There is no way walking this way for barely a year could cause damage that way my back is now. The doctor said it’d take years.  

So now we wait to find out how severe the curve is, what the lesion is, and we have to check bone density as well. One thing I do know. My friends, and family have been incredibly supportive. They’ve shown me such love and support throughout this past year and I’m so grateful.

family and friends

Vanderbilt- At Last

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My son and I before leaving to the airport

 

I am home from Vanderbilt. It was a long appointment, and a very difficult one for me.  The travelling was one of horrible experiences to date. Leaving Ft. Lauderdale airport,  I was refused a wheelchair because I refused to check my carry on bag. By the time I made it to the gate I had nearly fallen 3 times, and was completely exhausted.  The lights and sounds made my headaches excruciating.  Being in an upright position for so long, affected my spinal headaches, so that gave even more joy to my travelling. The travelling had worn me down, and I was at my worst by the time I got to Vanderbilt Thursday morning. I stayed positive, rather them see me at my worst, than my best! Because of the cold, I was seizing even more than normal, I was also falling a lot more than normal. I arrived at  Vanderbilt  at 8:30 am, I was tired, nauseous, shaky, and just feeling like crap. We headed up to the 5th floor, my appt was at 9:30, but due to not knowing the area or traffic we left our hotel a little too early! We checked in, and sat down to wait. I was called in for the autonomic testing. They were to do the Valsalva testing, breathing testing, and a tilt table, minus meds.

AFT Testing at Vanderbilt
AFT Testing at Vanderbilt

The nurse shut off all the lights for me, due to my sensitivity to them.  As the nurse finished hooking me up to the heart rate monitor, I started seizing. The pain was horrible, and my mom was trying to comfort me through it. Apparently I stopped breathing during it, so that scared her. According to my mom, who is a nurse, and the Vanderbilt nurse my heart rate went from 67 to 156 during the seizure.  After that I was out of it for a few minutes. The nurse continued hooking me up to the monitors. She couldn’t get a reading on the continuous bp cuff on my finger as my hands were so cold, she had to use hand warmers and then use a baby cuff. LOL.  As we started testing She was patient and comforting. We did the breathing test, where I had to breath against resistance, my goal was to hit 40, I didn’t even make it to 20. OOps. I became dizzy, it was awful. The other test was breathing in through nose and out through my mouth, I kept mixing it up and getting confused, and dizzy. This got me frustrated and near tears. After that was the tilt table. She tilted the bed up and almost immediately my nausea worsened, my chest pain worsened, and my dizziness increased. I kept saying I feel like i’m in Alice’s rabbit hole, according to my mom. I became very disoriented and confused, lethargic really. The test was finally over!  After that we could eat and wait for my appointment with Dr. Robertson.

 

Post Tilt Table
Post Tilt Table

So the moment we had been waiting for, for 6 months was finally here!!  We were taken back around 2:15, pm to meet with Dr. Robertson. I immediately liked him. He listened as I explained everything, how I felt, my daily routine, my limitations. He genuinely cared. He then asked me questions, and my mom questions. I tried so hard to keep up, but I kept getting confused and repeating myself. He was very patient with me. He then started his exam of me. He paid very close attention to my hands, in particular to my fingers, checking for inflammation. He also was interested in the severity of my photosensitivity. We spoke of my symptoms and how they affect my life. What’  I’d like to change. I explained I want to walk down the aisle, I want to dance with my husband for the first time. I want to be able to have a conversation with someone face to face without getting confused. I want to me able to go into the sun without feeling pain or passing out. He looked through the records I had with me from Cleveland Clinic. He was very interested in my case. He says I definitely have an autonomic dysfunction, but that’s not the only thing going on. We asked about MS. We waited with bated breath. His response was what i’ve known in my heart. That it’s a huge possibility. He suggested I get my MRI of my spine, he feels that’s where the lesions would be considering what is affected in my body.  I still don’t know if I’ve processed everything. He wanted my records, since Cleveland Clinic did not send updated copies prior to my appointment. I told him I will make him copies, and send to him. He said he really wants to go through my records page my page, and really read them and make his conclusion. I walked out  numb, not knowing to feel. He wants to stay in touch, and keep him updated on what we find.  He was so wonderful. By the time we left it was after 4:30pm.  I made the copies Saturday, and sent them via fedex, they will arrive tomorrow. I’ve already called his office and told them.

Mom and I at Vanderbilt
Mom and I at Vanderbilt

My Cervical MRI is scheduled for Next Monday, as well as seeing Dr. Tandri at Johns Hopkins. Finally, i’m getting closer to answers. I’m scared of what the MRI will show, I’m scared that in my heart I know what it will show, and you know what?? It’s ok!! If it is MS, I still won’t let it beat me down!!  My mom was so supportive through this trip. My dad has been amazingly supportive at home. My boyfriend worries so much and supports my fight every single day. My son loves me. Despite this illness I have a lot to be thankful for. I’ve accepted I may never know my true illness, while it will be awful, and could be dangerous, I have faith. I have the love and support of my family and friends, for that I thank you all. Those that have been on this journey with me, cried with me, laughed with me, I thank you from the bottom of my heart! My journey isn’t over. I still have a ways to go, and I’ll continue this fight as long as I can.

 

proverbs 3125