Friday, September 28, 2018

Updates and Benches

So a quick update. My MRI was clean, bloodwork says I am healthy as a horse, and the only thing that was off the charts was my Ebstein Barr antibodies. Which the doctor said was an indication that I had mono some time in my life. The strange thing about being involved in a tragedy like losing your mother very young is you become a bit of a family focus. I can promise I never had mono or my family would have known. Not even anything that resembled mono. So the doctor still maintains they believe I got something viral that attacked my facial nerves, muscles, and possibly my brain. So if I see anyone after this it will be the neurologist. Which I do still have ringing in my ears and I battle headaches but overall I am much better than I was! I personally think this WAS mono which explains the antibodies and is why I couldn't get out of bed. It's the reason I felt so incredibly exhausted for so long and we finally tested for autoimmune at a point the illness was going away. Again it's all just a guessing game. So my lasting effects may be the ringing in the ears and the eye swelling when I am tired or stressed. I can live with that. I feel like I can live with ANYTHING after feeling so crummy for so long. 

So yesterday we had a buddy bench installed at Jude's elementary school which will promote inclusion, friendships, and smiles. It will also be a lasting memorial to Jude. The school provided a dedication ceremony and it was very touching and emotional. We were grateful for their kind words about Jude and their memories of him. I miss him every day. It was so great to see Jude's nurses who attended.  Sometimes it's hard to convey to people just how much. I miss going home and holding him as we watched TV and how he loved to snuggle. As I drove away from the school yesterday I thought I could see Jude sitting on the bench and he was smiling. I am sure he was. 





Thursday, September 20, 2018

To curse or not to curse

(From 9/19)

I once read an entry to a blog that said if you can’t take a little cussing about a difficult situation then you shouldn’t read my entries. I’m on that same wavelength these days so I tend to share the same sentiment.

My husband isn’t feeling well and I know it’s from stress but if anyone is strong it’s Mike Ortiz and I know he will be okay. However keeping his stress down is something I would like to see people put more effort into controlling. He has been through a lot in the last decade and I would like to keep
him as healthy as I can. Sometimes I feel like people work against him as much as they can to make things as hard as possible. 

So this morning I woke up about 3am with an incredible headache and I could feel my right eye in its heavy position. So I confirmed the issue in the mirror and tried to go back to sleep but the sandman skipped my house. I knew that I had pushed myself to complete my quotes at work and the screen time had probably taken its toll along with multiple other tasks I’ve been trying to compete. My work was ever understanding that I needed an hour to rest before charging into work. I feel like when I’m out or late the brunt of my work falls on my friend and coworker Paula but she never complains. I finally scheduled my MRI, let’s hope I have the courage to complete it. I feel like such a wimp that I cannot complete something as simple as an Mri. However part of me feels it’s just a damn waste and it’s not going to show a thing. I want the MRI to be clear but on the other hand, I would love to find something that can be easily cured to stop this ringing in my ears, fatigue, and multiple other issues.

With that all being said I realized a few things tonight. That even though I have a serious situation going on I am still NOT a victim! Lately, I’ve struggled with this feeling because I’m
always on the go and suddenly I cannot go go go. When I felt like I couldn’t get out of bed I felt trapped and like a miserable piece of crap but that’s not the case. I realized God gives us the capabilities to handle every situation, it's just up to us to use what's been given to us. In our case life has dealt us a lot of tragedy that makes us a victim but we don't have to feel or act like a victim, does that make sense?  

There are a lot of times in life we can all act like a victim. 

1. When we have something catastrophic happen
2. When others have tragedies and we live through their situations. 
3. When it's easier to blame others for the hand you've been dealt or the hand you created. 
4. When we cannot forgive and let go
5. When we don't take responsibility for how our actions affect our lives. 
6. When we constantly feel sorry for ourselves and feel like everyone is judging us. 

So it's a matter of putting our big girl or boy underwear on and pulling ourselves together.  I figured the only thing I can do during my situation is to continue to smile and do my best. If I am late for work, I still made it to work. If I need to cancel plans with others to rest, then that's what I will do. I will work on complaining less about my pain but understand that expressing frustration is also healthy. I will continue to march on! 




Friday, September 14, 2018

Life Update 15 million

It is lunch time so I thought I would take some time to update my blog and all the updates surrounding our life. Unfortunately, Mike's father did pass away and yesterday we had his funeral. He had a beautiful Catholic mass followed by an awe-inspiring burial at the National Cemetery in Dallas. I had to smile several times at his services when the little children attending were acting up, running up an aisle, or making noise. I noticed their parents would get flustered but I could hear Mike's dad say (in his gruff voice), "You leave them alone they're alright!" He loved his grandkids and great-grandchildren. Mike seems to be okay but he does bounce around between emotions and I think he knows the next month is going to be very stressful. I won't go into the details because some things are better kept private but it's going to be a thorny path. I was incredibly grateful to my friends and family that shows up, sent items, and were so supportive of my husband and his family. It was very touching! 




I know people are wanting updates on my health and I don't know much more yet. The doctor did a battery of autoimmune tests the other day and so far the Lyme, Ana Wreflex, Rheumatoid, and C reactive are all negative. I am pending several other results. That's good and bad. It's great there is nothing showing up but it's frustrating we still don't have an answer. The doctor did have a reaction to an event the other day at his office. I explained I was overall feeling better or that I have learned how to manage the situation. I do feel better than I did so that's a positive! Anyway, I explained the night my husband's father died my eye began swelling and drooping again. By the time I got home, I had a throbbing headache and eye pain. He looked at me and said hmmmmmmm that's a stress reaction which leads me to believe this isn't viral." I replied, "neurological" and he shook his head in agreement. He then insisted I get the MRI. Which I know I have to get and yes I have delayed it because I cannot find an open MRI and I am extremely claustrophobic. I know they will probably have to medicate me and just booo. 

My emotions and my brain seem to be wrestling with each other lately. My emotional self-tells my body that if it wants to be well it CAN be well. That if I want to be the storm like in the meme below I can be a hell of a hurricane. That I don't need a diagnosis and I can heal all this with some goat yoga and more. Then my brain steps in and takes over my body and like at the end of the funeral events yesterday it reminds me something truly is going on. My eye began to droop, my body began to ache, my head began to throb and my daughter said, " Mom your face!! We need to go!" It's a very weird feeling to feel out of control of your body. I feel for those that suffer for so long without answers, mines just been two months. 




The rest of life is going well but still chaotic. Mike's niece who I adore just had a baby. I have always felt like babies come to the world when we lose someone we love because the one we lost opens a place for them on Earth. I feel the person we lost leaves an imprint on the child, it may sound crazy but it's just my thoughts. Anyway, his niece wound up back in the hospital with a bad infection so I am saying some prayers for her! 

I have a family member that is a youth pastor, I will save the name for anonymity, haha. Anyway, she said during prayer time at the church she filled out a card for my family that said " I am praying for all the shit to stop" and the pastor read it out loud. I guess the pastor knew that sometimes there are just no other words. 

Overall I am still very grateful for our blessings, I miss Jude with all my heart, and I am so happy I got to see Emily for a few days. There are always silver linings. 


Sunday, September 2, 2018

What happened Friday and Jude's birthday.

I have had a few days to process everything and I wanted to share what happened Friday. I also didn't want to say anything until we knew more and had all the details. It seems we have that now. 

Mike and I were set to leave on our vacation that would give me a much needed break from life and a chance to celebrate Jude. The day before we left they found Mike's father unresponsive and rushed him to the hospital. His dad has battled lung disease for awhile now and was in a rehab facility after a recent battle with pneumonia. Even though his dad had a DNR someone at the facility intubated him anyway, which in my opinion is just cruel. Mike's mom insisted we go on our vacation assuring us no one would make any decisions until we got back, so we left. About an hour into our drive we get a text that Mike's mom was now found unresponsive, no I am not kidding. The text explained that they needed someone that could make medical decision at the hospital ASAP and so.....we pulled over. Mike and I both shed some tears, not because our trip was cut short but because life is so hard sometimes. So Mike took me home and picked up his brother who is staying with us. I have been so sick that I didn't think it was the best idea to be in a hospital setting. I learned from Jude that more germs lace a hospital than anywhere else. So Mike gave me updates throughout the day as much as he could. 

Mike was able to get his mom and dad put on the same ICU floor and when that was completed and his mom was responding he felt comfortable to come home. I could tell Mike was a bit defeated but he kept his head up. Mike had a long conversation with the doctor and explained if his dad woke up he would be very angry he was intubated and sure enough that's what happened. I won't go into detail regarding all of it because there are a lot of hurting family members. We got a call this morning that they are moving his dad to the in house hospice at the hospital. So his entire family could use your thoughts. Thankfully the majority of family has made it in to see his dad and I know that will provide him comfort. I also know Jude with his ever loving arms is waiting for his grandpa to come play with him. 

Mike's mom has been released and she is staying with family. I would say I would pray for a miracle but I pray for peace in the best manner possible. I pray for peace without pain, peace without sorrow, and peace for his entire family. I admire Mike's family so much. I don't see them all often enough but they have my heart for sure. Mike isn't good with lots of texts and messages so I would ask everyone to refrain until we post more. Thanks

Happiest of birthday's to my little boy. I bet my mom makes you a cake today and my grandparents take you to the park! 

Wednesday, August 29, 2018

Triggers and Emotions

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! 


Tuesday, August 28, 2018

The MRI machine tried to eat me!

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



Friday, August 24, 2018

Neurologist appointment

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.