Hello all!! It’s been a bumpy few weeks, but i’m still standing! (Barely). First things first… My little boy started kindergarten Monday!! Such a bittersweet moment!! He’s growing up so fast! I may have shed a few tears! He’s my baby boy! 🙂
Mathew’s First Day of Kindergarten 8.18.14
I’ve been trying to stay ahead of my fibro and POTS flares, but not fortunate enough to do it. On Saturday, I became very ill very quickly. Around 11am I had a small low grade fever, by 6 pm, I had started vomiting, at 9pm my temperate had reached 103.9, and I was still vomiting.. I headed to the hospital. My PICC line was removed, and heavy duty antibiotics, Zosyn and Vancomycin were started. I was admitted before I even walked into the ER, thanks to my wonderful primary care doctor. I still had a fever at 4am! Luckily it broke, and between that and the antibiotics, I slowly became better. I was still nauseous, but ginger ale and crackers helped. My amazing friend Amanda brought me oatmeal for breakfast! It was so yummy and just what my tummy needed!! I was luckily released later Sunday night!
What a weekend!! I’m so glad i’m alright, the doctors are still trying to figure out what caused the fever and such. It was so scary.
On a positive note, I started my fall semester today, and hopeful it’ll be the best one yet!!
Being chronically ill can lead to feeling lonely or depressed. Surround yourself with loving friends and family. Remember you are a wonderful person, and deserve to be happy! Just because we’re sick doesn’t mean we’re less deserving!!
So a month has gone by without an update… Don’t be mad my loving followers!! I went to a conference in Washington DC hosted by Dysautonomia International. I met so many people, and learned a lot.
It seems the “experts” are against saline therapy, fearing addiction to it… Seriously?? My electrophysiologist laughed at this, as did many of us POTS patients at the conference. It was an informative conference, however they really only focused on one type of Dysautonomia. I was told by an “expert” that I needed to have my picc line removed as it’s offensive to people, and that I needed to cover it up for Lobby Day. I took an immediate offense to this. When morning dawned for Lobby Day, I was completely bedridden. The weekend of the conference was so full of informative sessions, it was hard on me to keep up, it was hard on a lot of us to keep up. I couldn’t attend Lobby Day because my body had had enough. I flew in on a Friday, and left on the following Tuesday. Two days of flights, and two action packed days of sessions. My body was exhausted. I ended up having to do a saline infusion just to get myself to the airport on Tuesday! lol
First night of Dysautonomia International ConferenceDay 2 of conference with custom cup by Jilly’s DecalsDay 3 of Conference
Once I got home, it took almost two weeks to recover. When my neurologist decided to extend out my infusions over the next 6 months, things happened that should never have happened. My nurse was changed, so I was assigned to a new nurse. The new nurse, when meeting me for the first time, decided to make her thoughts known on my saline treatments. She stated that I need to force fluids down my throat and have my picc line removed. On top of that I was allergic to the bandage she was using. I told her as much. She used it anyway, this was on a Monday. By Wednesday the bandage was falling off. When she came to check it, she didn’t even change the bandage. I had to tape it to my arm for another 5 days!! She also didn’t use gloves when changing my bandage, this set me off. I called the office to complain. When I experienced pain over the weekend, I had to call the on call service. I was told my the on call nurse to deal with it or go to the ER.. Seriously? When I called Monday to file a complaint, the lady that answered the phone told me that the nurse I spoke to on Saturday evening would never tell me that. That’s how they handle the situation? The nurse came Monday, and proceeded to make snide remark after snide remark! Saying “Oh are you going to report me for that too?” Unacceptable!!! I didn’t even call the agency again, I called my insurance company and filed a complaint. Upon speaking with my insurance company, I was told the agency was sending a new nurse. She came on Friday evening. She asked personal questions that she had no business asking. She pushed the subject. Made comments about my having a son and not being married, saying I’m a single mom with a tone of disgust to her voice. She told me “You need to make better choices for yourself and your son young lady!” WHO THE EFF does she think she is to speak to me that way?! To say this in front of my son?! Hell No!! My dad overheard this and said it’s time to leave. He was in shock!! The agency will be fired in the morning!!
On a lighter note, I’ve been blessed with two amazing friends for the last few months. My friends Amanda and Maria, have become such amazing friends to me. They’re truly been there when I needed a swift kick, or when i’m just feeling down, or when I need girl time!! I’m so glad we met, and formed such a friendship.
Maria, Me and Amanda
My saline therapy has been helping, unfortunately having an allergic reaction to the bandages isn’t helping. My EP is going to consult with my Neuro to do a port. I’m scared, but this is my life. This is what I need to stay hydrated and have less palpitations! I’ll do it! I’ve been having presyncope more often, as well as horrible vertigo and getting car sick. I’m trying to find things to help combat them both. 🙂 I’ve also been diagnosed with arthritis. My scoliosis is also worsening. I’m pushing through to stay positive about life!
Love, isn’t that something we all want? Those that have it are truly blessed. Loving someone so completely and without judgment is a beautiful thing. You never know what tomorrow holds. You never know if you’ll hear their voice again, or see them again. Cherish them. Cherish every memory you make together, for that love is so precious, and so rare. Look back on the memories, not with sadness, but with joy, and love. Joy that you experienced that, love that you had for that person. Sorrow can also be present, but don’t let it overwhelm you. Don’t drown in the sorrow, and memories. Live, love and cherish your time together, for you never know when you could lose it.
Hello Everyone!! Sorry I haven’t been around. I’ve been having some issues eating and taking in fluids. I had a Gastric Emptying Study done and according to my Gastro it is borderline. at 4 hours, only 72% of my food had left my stomach. Interesting to know. I’ve also finally gotten an endoscopy done. Turns out I have H. Pylori. Oh Joy!!! I also have white plaques in my esophagus, and gastritis. Very fun.. NOT. I was started on Antibiotics to get rid of the H. Pylori. Let’s hope it works.
I recently returned to Virginia to see my heart doctor. It was a very important and necessary trip. I’m also spending the summer at my mom’s in Tennessee.
I’ve learned that not all doctors care about their patients. This is truly horrible!! My gastro is amazing, as is my internist. My neurologist is also amazing! I’ve had no medication for my migraines (that don’t interfere with my POTS), and my legs are getting even weaker!! I keep hoping though! I’ve also been considering the use of a wheelchair. The pain when I walk is becoming unbearable. You learn to hide it, but i’m starting to not be able to do that anymore!
Let’s all focus on the good, and think of our blessings in life.
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
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 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
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!
That’s it for now my dear darling readers!!! Until next time, I bid you a wonderful day!!
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.
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.
livingwithdys.com 