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

2013-11-12 15.28.08
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

Dog and Sunlight= Laughs and Crawling

Here’s a laugh for ya! So I was inside relaxing, since I leave for  Vanderbilt tonight and I hear my dog barking like crazy. I  go outside not realizing how sunny it is. I’m instantly blinded, dizzy and just dropped to my knees. Now i’m crawling through the backyard on my hands and knees, to get her with my eyes closed because of the sunlight.. I had no idea what she was growling and barking at. So I finally got her!  30 minutes later she’s whining at the door to go out, I let her out thinking she has to go potty, but noooo not my Lillie Belle!!!!!.. Then, what do I hear????  The barking and growling again:  This time I went out prepared for battle..I had sunglasses and shoes,  and was prepared to crawl again if I had to dammit!  I heard hissing and the bushes were moving like crazy all down the fence WTH!!! ..She wasn’t backing down, I’m screaming for her, telling her to come, she wasn’t backing down. She was like “This bitch is mine! Mom”  LOL . I finally got her away from it, and in the house.  Then she starts pacing the living room whining to go back out and get it. So i’m assuming it’s a raccoon by her actions. lol. Our good little hunting dog!  I called my dad and he got a good laugh, though he was glad I’m alright. He said maybe a opossum. Maybe it’s a honey badger?! (for those that got the joke, good on you!)  Whatever it is, she wants it!  Hope this added some laughter to your day, because it sure did to mine!

Moral of the story: Just laugh, even if it’s at yourself. 🙂 I could have gotten angry, but what’s the point?

So..Who would win??? LOL 🙂

Lillie Belle     2013-11-09 20.22.02    Vs          raccoon The Raccoon

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

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.

Down Days

Never-lose-hope

I have had a few good days then a lot of bad days recently. Yesterday I spent pretty much in bed or on the couch. I just had no energy, and the pain was hell. I saw the Rheumatologist on Wednesday, she is now checking for Sjogren’s Syndrome. Joyous..Another possibility to add to the list. She was great, and put me at ease. She was very thorough and explained as much as she could to me, and answered all my questions. I even broke down with her.. “Is this my life now?” I asked her. She held my hand and said “Sweetie, it could be, it could get worse, could get better. Just remember your amazing strength and beautiful son. Never give up.” I couldn’t help but cry. How many doctors would help a patient like that? How many would take the time to truly care???? I felt honored to have her as my doctor. The next day was spent with the Electrophysiologist in regards to my pacemaker. He confirmed my biggest fears… That the previous surgeries were not necessary in any way, and I’m not completely dependent on my pacemaker. He referred me to a specialist. One that is an expert in POTS and Dysautonomia. He put me at ease, and helped me to not be so scared. It just means more traveling, for more doctors. 

Yesterday I woke up in an awful mood. I was jittery and just on edge. I just couldn’t shake the feeling. I was so tired, I wanted to just sleep the day away. I pretty much did. Between that and the pain, I didn’t want to do anything. Though I always push myself, i’m learning when to push and when to back down! I’ve still not accepted this. Accepted that I now have limitations, and I can’t do everything I used to. That I am, as a person, changing. I’m scared of losing who I am, the woman I’ve always been. I don’t want to do that. I’m terrified of it. I’m so scared of accepting things that i’m just avoiding, ignoring. I know it’s wrong of me to do. I know in time, I will finally accept things, but right now, I just can’t, I refuse.  I want love, a partner, someone special. What if I never find that?? I’m scared of that. I’m scared of being alone through this.

It’s a learning process. I’m still new to all of this, and I will continue to search for answers and continue to do what I can to keep my independence. I will not let this control me. I will not let it beat me down, I will not let it take the woman I am. I’m learning.. The woman i will become, she will still be me..a stronger me, a fighter. That’s what I am.. That’s what i’ll do. Fight, Remain Strong, and through it all, never lose faith in myself, God and my family.