So I called the MRI facility today to set my appointment with them since I didn't hear back yesterday. They stated they had not received the referral from my primary doctor, even though I know the doctor sent it. I swear to goodness I hate dealing with medical situations. My amazing chiropractor told me today I am probably letting some of this trigger emotions regarding past medical experiences with Jude. I have no doubt she is 100% accurate.
Triggers? What triggers?
Anyway, the good news is I am still about the same in regards to the lingering issues. My ears are still ringing, my head still hurts, I still get very tired in the afternoon, and my eye hurts. That's still a vast improvement from the initial assessment. So honestly my thought process now is wondering if these are going to be the residual effects left from Lyme or whatever disease struck my brain. So that would mean I just have to learn to manage the symptoms. Of course some days I just want to blow up but it's getting manageable. I told my work I went from miserable to manageable and that's an improvement to me. I will still get the MRI as soon as the facility gets their crap together and then I will take it from there. However, it will be after my vacation!
I also had a discussion today about Jude's loss and how it's affected my health. Watching your child take his last breath isn't something that you deal with it's something that you somehow someway learn how to live with. I have no doubt the grief has taken a very physical toll on Mike and I both, I am not sure how it couldn't.
Anyway, T minus one day and it's vacation. I am eternally grateful to my work for allowing me to take my scheduled vacation even though I have been working shortened days or working from home. I am blessed to work for amazing people!
The MRI machine tried to EAT me, well not really but it felt like it. I am so claustrophobic that when I saw the tube they were going to put me in I began crying. You think this would be an indication for the tech to take her time and explain things in the best manner possible. However once I laid down on the bed she came from behind and slapped the cage over my face locking it into place, that was it. Nope, let me out! So, we had to find an open MRI and are in the process of switching the orders over to the new facility.
How am I feeling? I get this question a lot. My response has begun to mimic my responses with my grief regarding Jude. I am okay today, I could be better, or don't ask. So why be so forthcoming about this situation and so public with it? A few reasons, it's going to become public anyway so why not update everyone at once versus setting myself on repeat. Why not continue my journey of being upfront and brutally honest regarding life in general and let others know it's okay to be irritated, lost, or frustrated. At this point, I have about half my energy back which is a good thing. My primary complaint now is a constant headache, ringing in my ears, and the pain in my right eye. I have found myself looking at the world a bit different as well. For instance, the little antibacterial wipes provided at the grocery store most definitely scrub my cart now! I always used them before but now I don't leave any spot unclean that I may touch.
Yesterday on my way home I found a type of peace with this entire situation. Something just came over me and I realized that eventually, this will get better and if for some reason it doesn't I would be with Jude and maybe he needs me. I doubt it would become THAT dramatic but it did make me realize that every single person reading this blog..........will die and that includes the person writing this blog. So I plan on living my life the best I can and enjoy as much of it as I can. I also realized I am learning this illness and what it takes to get through. If I start getting tired I have to rest, if I don't get enough sleep at night I have to go in late to work, and if I get run down near the end of the day I have to go. It's the only way I am going to tackle this.
Luckily even with my illness and intermittent absence, my work is still busy. Mike and I made the decision that we are still going on vacation. I will only be five hours from home and I will follow the same protocol there as I am here. There is a very beautiful chapel where we are going that I will visit for Jude's birthday.
Emily is doing very well at college and is officially all settled in her apartment. She has started school and I cannot believe she will be applying for the nursing program soon. Keep her in your prayers because she really wants into the Alabama program.
Don't forget the Emily's Smile Boxes Casino fundraiser, please. Tickets are selling fast and we cannot wait to see everyone! We are also looking for someone to sponsor the wine wagon that will be up for raffle and we will announce your company sponsorship all night. Here is the link. https://emilyssmileboxes.com/casino-night
I was going to update earlier but I got busy and now I am super tired so if my blog doesn't make sense at some point you know why. So I have been to the ER twice, my personal care doctor twice, and I have now been sent to a neurologist. Here is the latest update (drum roll)......... no one knows. what the heck is wrong with me and it's frustrating. However, they're trying and I just have to have patience.
The second trip to the ER resulted in a diagnosis of probable Lyme disease and they put me on painkillers and Doxycycline. I can say that I took my 5th dose today and I do feel some better. It was rather comical because the Infectious disease doctor at the hospital challenged the ER doctor and said Lyme is not in TX. She disagreed and put me on the medication anyway primarily to start eliminating issues. She specifically said, "You have something serious and we know it's serious and it's time to start treating symptoms to eliminate possibilities", smart doctor. I still have an excruciating headache, earache, ringing in my ears, and fatigue. However, the fatigue has subsided enough to where I feel like I can last longer at work so she might be on to something. The ER sent me home with instructions to see the neurologist and an Infectious Disease specialist.
The neurologist, sigh. First off I loved her nurse but the doctor's bedside manner was a bit standoffish. She listened to my afflictions but any time I got to something she wasn't comfortable with she would reply, "I am just a neurologist". After the 6th "I am a neurologist" I replied, "I know you are a neurologist I am very familiar was with a neurologist does." She replied, "oh so you have seen one for this before." My reply? "No, I had a very sick child for years who required frequent trips to the neurologist for his issues until he was placed on hospice". I said, "I know that the headaches, dizziness, ringing in my ears, facial issues, and more are all things that can be handled by a neurologist but at this point, each doctor keeps telling me I am beyond their complexity or they don't handle certain parts of this." Her demeanor then seemed to change and she began listening more and began the examination. She said she does NOT believe I had Bell's Palsy or Ramsay Hunt so she and ER doctor #2 concur. She said if it's Lyme it's far beyond her scope of education and that Lyme is an issue here Texas despite what the infectious disease doctor said (she laughed about his response). She said she believes I have a droopy eye which means something affected the muscle and the nerves in my face. She believes this was a "nasty" virus and it may have attacked my brain and she seemed frustrated the ER didn't complete and MRI. So I have a contrasting MRI tomorrow at 1:30pm......I hate MRI'S and I am already dreading it. If it's an emergency they'll obviously call but if it's not I will find out if anything showed on the MRI at my next visit.
As previously stated this has been very challenging for me. It's one thing to not want to get out of bed in the morning but to not be able to get out of bed is a whole different mind blowing situation. It can certainly wreak havoc on your psyche and I admire those that deal with chronic illnesses without answers and chronic illnesses in general. I know everyone is concerned and that's why I wanted to update as a whole.
I am still sick and at this point, it seems they are guessing at what's wrong. I guess I always understood that the medical field uses it's the best hypothesis of the situation to come to a conclusion. Jude's situation was always a guessing game so it shouldn't be anything I am surprised by. Also if you are annoyed with hearing I am sick, just imagine how annoyed I am! Each morning I wake up thinking the day is going to be different then the horrible ringing starts in my ears, my eye starts to close in, the fatigue strikes, the vertigo is awful, the headaches are throbbing and I wind up either in bed or trying to get through work. I am always on the go and truly enjoy being that way. So the only way I can describe this is to think about getting out of bed and going to the grocery store, just the store.........now think about being absolutely exhausted from that trip. So much so that you cannot do anything the rest of the day. No walking, no trips, no extra stuff. It's frustrating and healing takes time but now I am beginning to worry a bit and it seems the doctors are too. I received some phone calls today to check my status and suddenly there seems to be a hurried feel about everyone's conversations with me and they are trying to get me in with a neurologist prior to Monday.
Before any recommendations come, let me sum up what I have done. I have visited the doctor and been diagnosed with Bell's Palsy and then that was changed to Ramsay Hunt Syndrome, and my guess is that will change again. I have tried a juice cleanse, medication, oils, baths, diet, chiropractor (but only once so I need to do that again), meditation, prayer, etc. Today I am at my wit's end. Today is the type of day that if someone told me, "This too shall pass", or " it could be worse", or "count your blessings" you might get an angry scowl. I am not having a pity party I am just pissed but wait a few hours and that will be gone. I tend to always find the silver lining like as of today I have lost 11 pounds during this battle.
So what do I think happened? I think 7 years of no sleep and 2 years of complete and utter stress took its toll. To what extent, I have no idea yet but use me as an educational tool to take breaks, de-stress, and get life insurance. Next weekend I am supposed to go away with my husband. He has been so kind throughout all this and really picked up a lot of slack for me. He said we are going on our vacation even if I just sit in the hot tub in the room the whole time. Let's hope that doesn't happen.
I am at work each day that I can be and I work just as hard as I always have, however at this point I have to take a step back. Many of you know that I have been moved to sales, however, I have continued to try to service policies as well. I have multiple people in my office that are here to service policies. They are amazing, efficient, and I have no doubt can service your policies as well as I do. So I need everyone to help me out in little ways when possible so I can rest as much as possible. Any billing questions, ID cards, change in vehicles, etc can be handled by our team who are here to serve you.
I am also stepping back and turning everything off for a while. It doesn't mean I am gone it just means I need a bit of a break. I am a little frustrated that our lives seems to be getting back on track and this situation derailed us but I am thankfully my family is safe and healthy.
Well, I thought I would give you an update on the great sickness which is on day 18. My symptoms continued to get worse and progressed into the following:
Facial paralysis
Slurred speech
Very loud ear ringing
Extreme Fatigue
Flulike symptoms
Dizzy
Headache
Blurred vision
There is more but you get the gist! This caused me to go back to the doctor where I was diagnosed with Ramsay Hunt Syndrome. The general consensus has been, "What the F is that?" Exactly
"Ramsay Hunt syndrome (RHS) is a rare neurological disorder characterized by paralysis of the facial nerve (facial palsy) and a rash affecting the ear or mouth. Ear abnormalities such as ringing in the ears (tinnitus) and hearing loss may also be present. Ramsay Hunt syndrome is caused by the varicella zoster virus (VZV), the same virus that causes chickenpox in children and shingles in adults. In cases of Ramsay Hunt syndrome, previously inactive (dormant) varicella-zoster virus is reactivated and spreads to affect the facial nerve."
Saturday was so horrible I wound up in a total breakdown screaming at my husband while in the bath and posting a large rant on Facebook. I know better than this but I did it anyway. That turned into a menagerie of messages so I just decided to post updates on my blog to help those who are so sweet and have asked for updates.
Sunday I still didn't feel well and that morning I decided I DON'T want to live like this. There are people that live years with this condition and I realized that even though I don't want to have it I do have it. So I have committed myself to say no when I need to, to de-stress, to take time off work when needed, and to treat myself to more relaxation. I have also happily accepted the prayers people have offered and believe they work. Then on Sunday night I started feeling less flulike. When I say I felt bad enough I thought I might not be able to continue working, I mean it. So I truly wanted to turn a few flips on Sunday night in my yard. However, after I cooked dinner I went and sat back down. I am learning to rest and trust me that it is an education and a lesson I have to learn. Today I came into work at 9:30 even though I wanted to push myself to go in at the regular time. I stopped several times for breaks from the computer screen and although my eye is dropping again and the swelling is there I still don't feel as fluish and that I am very grateful for.
Looking back this was coming on for months I believe. I remember just not feeling right and feeling very tired. So as a society do we all need to take more time to listen to what our body and mind are trying to tell us? I know I do!
I am continuing my meds, seeing my chiropractor, and learning to rest. I am learning to read my body like right now when the ringing in my ears picks up and I get more tired, it means go home Jenn. This has been a spiritual lesson for me too and I have no doubt a new journey. Hope everyone is well! We are approaching Jude's tenth birthday and we will be going somewhere beautiful again to celebrate him.
