Bronchitis (Pneumonia?) Infection 

19 May

I’ve had a common cold for the last 4-5 days. Last night I fell asleep around 3-4am and woke up at 6am with very bad chills. I couldn’t open my eyes and my pain was severe in every organ, bone, muscle worse than the daily usual. I started hallucinating and I thought I was in the hospital so I recall answering “nurses” and “doctors” questions. I was talking for a few hours here and there telling what hurt and where. I later open my eyes and thought I saw a nurse. I was still talking. I had a fever of 104 (not my highest) but still enough to make me feel more horrible than my usual nightly fever and chills. 

I text my mom to come check on me and she woke me up when I finally able to fall asleep and scared me. But I noticed I was at home and wondered who I was talking to all morning? I could barely even move my leg in my bed that’s how bad the pain was. So my mom took me to the ER and the doctor said “sounds like an infection, bronchitis but we will check back if the antibiotics don’t work to see if it’s pneumonia”. Having PrimaryImmunodeficiency (PIDD) a common cold can turn into a death trap. So I’m hoping this doesn’t get worse. At age 19 I nearly died from elderly pneumonia having only 10% of my left lung working. That was a rough 2 months of recovery. 

It’s hard to think my brain is hurting worse than usual so I will end it here. I hope all of you are finding better days or a reason to smile. Hang in there everyone. 

Neurologist Appt & Carotid Artery Sonogram 

11 May

I saw my neurologist today and he upped the dose of my Keppra (anti-seizure/anti-convultant med) to 6 pills per day at 250mg each (1500mg per day). He wants to do a sleep study and more spinal MRI soon. I also had a carotid artery sonogram a few days ago. I don’t have the results yet but will see my cardiologist soon. 

Haven’t been feeling so well. Lupus and the heat don’t mix. I hope you all are finding better days. Hang in there! 

How Technology Has Helped My Memory Loss 

4 May

I feel like everything now runs like a clock, I take my meds when my phone reminds me, I watch my tv shows when my DVR records them and reminds me they were on, I go to my doctors when my mom or phone reminds me that it’s a new month, new day and time for an appoiment. I was a hard-working General Manager and my job was to balance budgets, be wise, efficient, on time and multi-task. 8-9 years ago I first started having the migraines at work which sent me home on one occasion. I then kept having “the flu” everyday at work with bad sciatic pain and hip pain. I knew my Lyme was no longer in remission and my other illnesses were breaking out. 

I was diagnosed with short term and long term memory loss. I could no longer remember anyone’s name, my friends or memories growing up and I couldn’t tell you what I did 5 minutes ago. It is scary losing memory at such a young age. I have no idea if this will lead to dementia or Alzheimer’s in the future or will I ever get my memory back. So far it’s been nearly 10 years and nothing has improved. I feel like I’m 90 years old and at the end of my life cycle. 

I used to wait for a certain day to watch my favorite tv show, like “hey dad it’s nearly Tuesday NCIS is on, wonder who the killer will be tonight”. Now it’s like “hey the DVR shows NCIS recorded a couple nights ago we missed it”. Then when I watch it I’m constantly saying “wait who is Agent so and so, who is that lady, I’m lost”. So tv shows are very hard to follow but thankfully DVRs remember the dates and times for me. As I’m writing this and without looking at my phone calendar I couldn’t tell you the month, day or time it is right now. Sometimes I don’t even remember the year. I think ne time I asked my mom if it was 2015. It’s scary. 

Without technology I would be so lost in this world. Without my parents I don’t think I would be able to take care of myself anymore. I made this blog to remember things I don’t remember writing or saying and to keep my life on technology. 

Modern Family Cast Does The Lyme Disease Challenge 

13 Apr


New Diagnoses, Anti-Seizure Meds & New Neurologist 

9 Apr

Myoclonic Seizures 

I finally saw a new neurologist in my new city. He said I had very “brisk” hyper reflexivity. He thinks I have a few different issues including a issue that causes my muscles to get weaker as I use them (the name slips me). He said I may be having seizures causing the long, weird fainting episodes (not the same as the Pots passing out). My cardiologist thinks it could be arrhythmia amd Neuro thinks it could be seizures. He did some testing and has diagnose me for now with myoclonic seizures or muscle jerking and involuntary movements. He has put me on Zeppra (Levetiracetam) which is an anti-consultant or anti-seizure Med. He seems very thorough and we will be doing a ton of testing for brain wave, sleep study, nerve testing….. Along with my heart testing over the months. 


Comments Notifications Bug 

28 Mar

Just a quick note that the notifications for your comments on this blog has been having errors lately and I cannot see, read or reply to most of the comments. Comments seem to be out of order on the WordPress app. Hopefully this gets fixed soon. Thanks for your comments. Keep up the good fight. 

Update & Tips Over The Years 

18 Mar

Cardiologist Update 

The heart doctor said that my two week monitor didn’t catch the passing out episodes of any arrhythmia. The issues happened before and after the monitor was on. So she suggests I get a heart monitor implant that goes under the chest skin for 3 years. She said my heart was very slow at night sleeping and very high during he say when awake. She said my heart skips beats but that is “normal”. The 50mg of Losartan is keeping my tachycardia down to the 130-140/100-90 range so my BP is much better than it has been since I was 13 years old. I was worried that long with tachycardia my heart would be a mess but so far it’s not as bad as assumed. Cardio said I have some “mild leaky valves”. 

Next up is a nuclear stress test. Then a sonogram of the carotid arteries in my neck. And then I choose if I want the heart monitor “surgery” which looks very simple. I think I will do it since my episodes come and go. The episodes I’m talking about are the ones that are not POTS but the longer fainting episodes. With POTS I stand up and pass out, wake up on the floor and go sit back down. With the other episodes I start seeing tunnel vision, hear words backwards, can’t understand anyone, can’t move, I HAVE to lay down even if it’s a dirty bathroom floor and I eventually pass out for a while. The episodes last about 45 minutes. My skin turns paler white to gray, I’ve been told I look “dead” and one lady thought I had passed away calling 911. It’s happened about 5-6 times since last year. Cardio thinks it’s brain or heart related. 

It’s good to keep testing and rule things out. The more I test the more illnesses I’m diagnosed with. Don’t let anyone tell you nothing is wrong if you know your body and know you are suffering. 

 Some Tips I’ve noticed over the years:

  • IV Rocefin (ceftraxione) can cause your gallbladder issues and to have to be removed. Ask your doctor before you use it. 
  • Doxycycline and the sun don’t mix, I still have a scar on my forehead from being in the sun for a few minutes while on Doxy. 
  • Being too aggressive on antibiotics, using too many at once and high doses caused thrush, severe candida and c-diff. It took about 8 months to heal from all and I had to stop all antibiotics. I was on a ton of probiotics and took all precautions before started the aggressive treatment but it didn’t help. I had a flesh eating type of thing that was not only scary but very painful.