My First “Vlog”. Jude’s day

Emily, The Great Fall, and Life.

Great news on Emily, well most of it anyway. Her biopsy did show inflammation in her thyroid but no cancer! Also her MRI was clean. So Emily was officially diagnosed with Hashimoto's and they seemed to have have found a good medication for her so she is finally feeling better. She spent her Spring Break seeing multiple doctors but since she is feeling better it was all worth it. 

So because my life always seems to be chaotic last Saturday the 9th wasn't any different. I had spent the day cleaning outside and was very tired so I went in the house to take a shower. Mike had been shampooing the carpets in our bedroom and I didn't think about the fact it would leave residue on my feet. I have a very deep tub/shower combo and when I went to step into the tub I fell. My foot slipped and I remember thinking I would catch myself and I didn't. My body twisted sending my left leg up under the glass and I landed on my right ear/head. I felt shooting pain and just began screaming for Mike. He came to my aid and I don't think either one of us really understood how bad the fall was or how much worse it could have been. Over the next few hours and days my leg began turning lovely shades, my ear was bleeding, and my head was pounding. I assumed I would be fine but my friends and family got to listen to me whine a lot (A WHOLE LOT). So about a week later my boss made me go to get a concussion workup and when the urgent care saw my leg they sent me to the ER side. Sure enough yours truly waited an entire week and had a closed head injury, don't do that! Take it from me and get checked out. The point of this drawn out story about my clumsiness is that when I fell and Mike pulled me out of the tub I just sat on the bed and cried. I just broke. Maybe it was finally needed. I just cried and cried and cried. I said, WHY do things keep happening to us? Then I got up and saw a tree had fallen over on my chicken coop fence and I shook my head and walked off. 

Here is the thing, I could have died from the fall or had a compound fracture but I didn't. Emily's biopsy could have been must worse and Mike's chest pain could have been a heart attack. The coop fence can be fixed and all the other complete bull%%$@ we deal with never ever compares to losing Jude. So it's all fixable. However, for the first time I just said NO MORE. It was like a declaration to the universe that nothing else needed to happen to us. I know I cannot control this but I just felt I needed to let God and the Universe know that I couldn't take anymore. So from that moment forward I just started believing nothing else was going to happen and that I needed to distance myself from any type of negative news for awhile. So I am respectfully asking people to let me heal for awhile from everything that's happened and let me have a bit of a break. Spare me from sad news or tragedies unless it's vital. 

I have been spending more time outside walking our dogs, spending time with my good friends at wine nights, and watching lots of movies. So I am taking what steps I need to so I can decompress and recover from a rough ten years. Last night I sat and went through Jude's book from his funeral, it's something I needed to do. I don't remember a lot from his funeral and it was comforting seeing all the names of old friends and new friends that made their way to tell him goodbye. 

So it's been a joke that 2019 has started off absolutely terrible but I am declaring this the year of  a return to health and a positive state of mind. 

Update On Emily And A Hard Weekend

I have been mulling around the words for this blog today but I am having a hard time properly articulating the exact emotions I am feeling. I worry about sounding down, defeated, or brimming in self pity. Honestly though I don't really care how I sound anymore because I am at my wits end. I haven't been very talkative today because I am processing all the thoughts I have and evaluating what's important in life. So I cannot handle bad news today or honestly much chit chat so forgive me if I am not answering you, I will. I talked with Em prior to posting this so she is on board with people knowing what's going on. I just ask people to refrain from texting or calling her because she is overwhelmed.  We have been hit by what seems like an endless cycle of tragic or stressful circumstances and each time one strikes we find a way to keep marching on. A sign that hangs in our house is, It's not about waiting for the storm to pass it's learning how to dance in the rain. However, sometimes the flooding from the hurricane is just too much. Sometimes it just takes a huge toll. 

On Saturday Emily called me and said she was being taken to the ER by her friends. Keep in mind Emily is in Tusacaloosa at school. I basically said, "What why?" I knew she has been having issues with the problem I referenced in my prior blog and has been very ill for weeks. She said her blood pressure was reading high around 145/85 and she had a high heart rate. She also mentioned her heart felt like it was fluttering. Having dealt with Jude's medical issues this is how my brain works in order....

High blood pressure - Probably anxiety
High heart rate - Probably medication related
Fluttering heart - concerning but I have heart palpitations so it could be hereditary, could be medication, could be multiple items. 
Hold it together mom and be calm on the phone. 

So I tell Emily to contact me once she reaches the hospital. A few minutes later she calls back and says when she stands up her heart rate soars over 150. Call 911 Em, and she did. They got her to the ER and thankfully most everything checked out normal. Her thyroid was off which was the issue from the start, she was having a panic attack from feeling so terrible, and side effects from the thyroid medication. So they released her knowing she had a Endocrinologist appointment yesterday at 11 am. However, prior to releasing her I was researching flights trying to get to Alabama because I had enough of being so far away from Emily while she felt so terrible. Mike talked me off the ledge and when the standby flights turned red I explained to Emily I just wasn't going to make it on a flight. 

Fast forward to her specialist appointment. I had an event in Dallas yesterday so when Emily called I excused myself and walked in the other room. She was crying.........like trying to find her voice crying and I was once again scanning scenario's in my head and wondering WHAT was happening. So she calmed down and said she was diagnosed with Hashimoto's and then she informed me they found a nodule on her thyroid. They said there was a slight chance it could be Thyroid cancer but it's rare. For a minute the world seemed to spin and I muttered something to Emily who promptly reminded me she was calling ME to calm HER down. Of course of course I said and then asked what the next course of action was. They will do a biopsy of Emily's thyroid next Wednesday and they put her on new medication for her Hashimoto's. To do the biopsy they will insert a needle into her neck into her thyroid. Right after my call to Emily I called Mike who was now standing on the ledge with me in full force and also talking about flights. 

Emily then took paperwork from the school to the primary campus health department to have them fill it out for a type of college "disability." Which basically just means she's been dealing with an issue that has made her miss classes (keep in mind she made the Dean's list with this mess) and they will work with her professors regarding absences as long as she completes her work. The lady at the healthcare center must have been having a bad day because she was extremely rude to Emily. It's hard letting go of your children sometimes because the Mama bear in me wanted to call the department and professionally explain that their job was to make her situation less stressful not more stressful. College's wonder why we have issues with mental health. Anyway, I encouraged Emily to email the doctor directly and explain the entire situation and ask for help. She assured me she would do this. 

Here is the reality. 90% of these nodules are benign and I have no doubt Emily's will be too. I have no doubt that this is simply being caused by the Hashimoto's.  With that being said statistics can sometimes grate on our nerves with our family as a whole. Every time someone gives us a statistic we tend to be in the 10%.  We are literally the, "You have got to be kidding me." elephants that are in the room with everyone. That is the best description I could come up with. There really isn't much to say......we know we will get through this, we know not to let it get us down, we know it could be worse and we know all the other words of encouragement anyone can offer. The reality is we have faced many situations and they didn't turn out well so we are staying very positive but are still a bit scared so we have asked for lots of prayers.  People might just have to bear with us while we are a bit angry for a bit, I am sure it will pass soon. Emily is young and shouldn't be dealing with this and our family should really just get a pass on a child being sick. Once we get over being upset we will march forward yet again. I am quite sure Jude is helping us every step of the way and holding his sister's hand for sure. She is the one dealing with this head on and as usual she's amazingly strong. Emily has a resilience like no one I have ever seen and a great heart. 

Waiting on the shoe to drop? Make it stop raining shoes!

Sometimes it gets to a point to where I feel like Eeyore always saying something has gone wrong. So here is the gist of the situation at hand. Mike is better but still having some issues regarding his heart so we still work to keep stress down, which isn't happening. Emily called us the other day and told us she just hasn't felt well for awhile now so she decided to go have a blood test. We haven't really said anything except to close friends and family but Emily mentioned she hasn't felt well on social media so I thought I would explain. Anyway basically per the blood test Emily is in fact dealing with an illness and one that's most likely an autoimmune. I am super impressed this dedicated girl made the Dean's list while she was SO sick. She is really suffering so if you could keep her in your prayers that would be great. She started her medication today and we are praying it helps her and gives her some relief. At first I was mad that I have another child that's ill but then I become grateful it was diagnosed and that it wasn't anything worse. Again, trying to see the silver lining. 

Then we encountered some more stress this week that isn't worth going into but then even more hit when this morning about 10am Mike called my work. He simply told me that he had been hit by an 18 wheeler. I asked, "Are you okay????" He replied, "Yes. Police are here I have to go." So I felt relieved he wasn't hurt but was wanting more information and very concerned and laughing because what the heck else are you going to do at this point but stress laugh. So finally Mike called me back and a semi backed into Mike pushing him into the car behind him. So we are grateful he wasn't hurt, grateful he was in a large truck, and thankful he wasn't in my Beetle because as Mike said, "He would have been up in your engine." His bumper is gone, his hood won't open, and his front is messed up but it's nothing that cannot be repaired. So again finding the silver lining. 

When does it become enough? About 10 years ago!! lol. I am a bit tired of looking for silver linings in life but Mike ever the best player of this mad game said, I would let everyday be like this if I could just have Jude back. Isn't that the truth so as hectic as life gets it's never as hectic as not having him with us. When I called Mike to tell him about Emily he said, "You know let's add more to the plate because I don't think there is enough. You know there are a lot of people out there that have had difficult lives and we really need to take some of their burden." haaaaaaa! The truth is that we are blessed and there are people that have VERY difficult lives and like I always say, everyone has a story it's what you do with yours that counts. 

God Bless and Happy Valentines Day. 

Another Hard Blog With Good Tears

Mike and I have been dealing with a high stress situation yet again. One that landed him in the ER yesterday, he will be okay. However being back in the hospital always induces anxiety in both of us. Overall we handled the situation well but on the way home I just started crying at the thought of possibly losing him and the thoughts of when we lost Jude. I thought I would write out what happened when Jude passed for therapy reasons and because others just may relate. It's also my chance to finally thank so many that helped us. I have talked about a bit of this before but not the exact company's. 

It's strange when someone dies and being around death many times I can attest it's even more uncomfortable when it's a child's death. It's a mixture of feeling you don't know what to do but knowing you know exactly what to do all at the same time. I cannot truly explain what it's like to watch your child die but I can tell you that it leaves you in utter shock, then somehow you find a way to move even though you feel frozen in place. I called my dad and step-mom, I called Jude's nurse, and I called Mike's mother. All three families contacted asked if they could come over. It was odd to me at first because you think people just want to attend the funeral but they wanted to come see him before he left. I also called my aunt in Missouri. Those core people were all in charge of informing the rest of the family but not saying a word to Emily until we reached her. If you remember, Emily was away in Dallas. 

I remember picking up the phone and calling the funeral home and making arrangements for them to come pick Jude up. I then looked at Mike and asked him to go get some new Superman Pajama's from the store. It gave him a project because he was stunned in silence. I then contacted Trey Ganem who made his custom Superman casket and he had that item turned around and delivered within 48 hours. Mike made it to the store and said he was just standing in the children's clothing section and a clerk came over to ask him if he could help him locate something. Mike said, My son just died and my wife asked me to get him Superman pajama's." The clerk had him covered and helped Mike every step of the way. 

Once home with Jude's clothing his nurse Charlotte helped me bathe Jude, dress him, and fix his hair. That was disturbing to see Jude like that but comforting that Charlotte helped me make Jude look handsome. As family flowed in so did the funeral home who had a director by the name of Matthew who since had become a friend. He was kind, talked slow and calm, and helped every step of the way. He cried with us saying he had young children and he put his heart into everything he did. Lucas Funeral homes were truly amazing to us. They even joined in with Jude's theme. 

Matt gently explained at the house that they would be taking Jude out covered and loading him in the hearse to go to the funeral home. They told us to take our time but everyone was ready. Silently they covered his little body with a golden type of blanket and they asked Mike if he would like to push him. Mike agreed and it was one of the best things the funeral home could have done. We all silently followed behind Jude, then Matt advised us we would meet the next day, and then Jude was gone. It was so strange and so final. 

After that we had meetings with churches, friends, pastors, and more regarding music, speech's, flowers, and other items that were for the living. Jude however didn't have to worry about any of that. I think he just sat back and watched how much everyone loved him and how much he touched everyone's lives. 

So the waves of grief are smaller in height now and grower fewer between crashes but when one does hit me these are the flickering pictures that run through my head of the very worst day of my life but the best day of Jude's. He got to see heaven that day and that was pretty amazing I am sure.  I have learned through this difficult course that it's okay to have a grief day every once in awhile and to have a really good cry. I think it soothes the soul. 

A Display Sign Of Sickness

Anyone on my social media knows I have been battling an illness since July and I have now been plagued with pneumonia.  I wouldn't say I used to get annoyed with people that were sick or their posts but I would wonder why they just couldn't be positive. I used to be sure that those particular people who were constantly experiencing an illness or tragedy had to have their own negative underlying force propelling their situation. It seems karma took a big flat flyswatter and smacked me in the head with it teaching me humility and empathy. I cannot explain how irritated I am with resting in my bed because I am such a person on the go. Yet again this weekend I will be spending the majority of my time resting and trying to get better. Ironically all this came on after I started working out again. I had a friend joke that I should just get rid of the sage in my office and all things healthy and try the complete unhealthy route. We had a giggle over his comments. 

The consideration came up that maybe I was letting the grief over Jude control my life and my health. I don't think this is the case. I have no doubt that it has had a profound effect especially because Mike and I didn't sleep for more than 7 years. In fact, the doctor recently told Mike (who is ill too) that Jude's situation ravaged our bodies, but we wouldn't have changed anything. I believe that although grief effects us we also grow from it and learn to live again. We had a choice to give up or keep marching and out of a promise to Jude we kept marching. My aunt sent me this article yesterday and I think it perfectly describes our personal feelings regarding grief and it's lasting effects. 


 https://themighty.com/2018/12/ball-box-analogy-grief/?fbclid=IwAR0uAPKI7L38tOnb-tPfXxmek_RJ-DZ53r-fCplspw_1JKEcf0WCViRj4_s


I am ready to get better though I can tell you that! I am looking forward to being healthy and take a weekend trip away with my husband somewhere! All those out there dealing with daily illness situations, you have my complete and total respect. 

How Do We Fix The World Today?

Being around the pageant industry I am always hearing possible on stage questions for the contestants. One of the recent questions I heard was, "With all the tension in America today what would you do to improve relations between different groups and individuals?"

I sat back and thought about what my answer would be and honestly I couldn't formulate an exact way to fix relations. However, my mind drifted to Jude and I began to think about all he taught me. I don't know how to fix relations but I know I had a little boy born who suffered a massive bilateral stroke. He couldn't talk but he really didn't need to because Jude had a way of communicating without even speaking a word. Jude loved everyone he met regardless of their race, religion, sexual preference, or political stance. So I may not know how to fix our world but maybe it starts with striving to be more like Jude. A little boy who changed those he met with pure love and smiles. 

Seems like a great goal to just try and put good energy into the world. I can only imagine the impact if we all met that goal this year. 

Merry Christmas.  

The Funeral and Friends

The other day I subjected myself to watching, "Steel Magnolia's" for the first time in a long time. I am not sure why I do that to myself but I do love that movie. I am sure that you remember that I used a line from that movie in Jude's eulogy. "Oh god. I realize as a woman how lucky I am. I was there when that wonderful creature drifted into my life and I was there when he drifted out. It was the most precious moment of my life."   I was telling a friend the other night through my streaming tears that it's still the most realistic depiction of child loss to me. Which is interesting since it was written about a true story but from a brother's perspective, however, he captured my feelings perfectly. I have written about this movie before and the same feelings still apply. 

When Shelby passes and her mom walks into the waiting room on a mission to retrieve Shelby's clothes and pick a funeral home is so realistic to me. You begin to think about a situation you never dreamed you would be dealing with. It's your child's last ceremony.........no more birthday parties, no weddings, and no graduations. It's planning their final send off to the best of your ability. You think about their clothing and sit in shock in a funeral home as everyone chatters around you. You are just on a mission to make it beautiful and meaningful. 

I related a lot to the friendships in this movie. My friend Kelly is most definitely the very embodiment of Claree and many my other core friends fill the other roles.  I don't remember many parts of the day we buried Jude but I do remember my friends watching me like hawks. They did this purely out of concern for my well being. I tried to be very strong that day but at one point they came knocking at the church bathroom door wondering if I was okay. I wasn't. I was panicking because I knew that I was about to say goodbye to Jude for the very last time. They could tell when I came out that I wasn't okay so my friend grabbed her firefighter husband who helped calm me down. I then rerouted the entire entrance for the family to the funeral through a side door versus in the middle of the church. It just let me breathe a little easier. 

My meltdown wasn't beside the casket like in the movie it was before and then after I put on a quiet smile as we attended a luncheon that was provided for us. My friends and family came together when Jude passed in a way that is almost indescribable. In fact my grandmother said, "I have never seen better friends and people move so quickly to make things happen." All I had to tell my friends was I would like balloons, large photo displays, and a few other things and they moved like clockwork. They didn't need to ask my opinions they just made it all happen. 

At the luncheon, my friends asked for a photo and it felt almost wrong to me to try to smile on that day but I am glad we have a memory of all they did. I am thankful for them. 

"I feel fine. I feel great. I could jog to Texas and back, but my daughter can’t. She never could. I am so mad I don’t know what to do. I want to know why. I want to know why Shelby’s life is over. How is that baby ever going to understand how wonderful his mother was? Will he ever understand what she went through for him? I don’t understand. Lord I wish I could. It is not supposed to happen this way. I’m supposed to go first. I’ve always been ready to go first. I can’t stand this. I just want to hit somebody until they feel as bad as I do. I . . . just want to hit something . . . and hit it hard. " Ma'Lynn's monologue.

So very true every part of it and my friends would have definitely had me take a whack as Ousier.

Advice and Goals.

So you get three blogs from me this week which means I must be feeling more like myself again. My eye is swollen today and my face hurts but that's okay. The stretches between these flare-ups is getting longer and longer, which to me means I am healing. So this week I have been approached twice by people I know for recommendations for a child neurologist. It makes me sad that anyone I know would have the need for a neurologist but having a good neurologist that cares for your child is vital. So I thought I would share a few things I learned with Jude just in case that could help any of my readers. 

1. Jude saw lots of doctors and his best doctors knew his case without even opening his file. Over time they began to truly care for Jude and always had his best interest at heart. His neurologist even quietly showed at his funeral slipping in the back and then slipping out just as quickly to get to his next patient. The neurologist we picked listened...truly listened.

2. A good doctor may be a far drive but a good doctor is worth it.

3. A fever isn't always a scary thing, even a high fever. Sometimes a fever is just doing its job and fighting the infection.

4. The internet can be a plethora of useful information but it can also be an unnecessary added stress so always consult with a physician before scaring yourself.

5. You are your child's best medical advocate. It's okay to say no to a physician, it's okay to ask for a second opinion, and it's okay to request additional treatment.

6. Always fight a denial on insurance or Medicaid. They're counting on 3 out of 5 people to not challenge them. I was flat out told this when I won my 8th appeal for nursing for my son.

7. Keep video's and journals if you suspect your child is having seizures or spasms. They are can be vital for a proper diagnosis.

8. A medical momma has a whole new outlook on things like medications and vaccinations, don't judge her or yourself.

9. It's okay to say no to friends and family. Your child's health is far more important than a get-together or holiday.

10. Only go to a pediatric ER if you suspect something is wrong. Any time we went to a regular ER we were transported or they were just lost. They can be great for a broken arm but anything that's complicated needs a pediatric emergency physician.

11. If your child doesn't have trunk control to sit look into Danbar Hensinger head support, A Bumbo chair, The Tomato seat, and a KidCart or wheelchair with a headrest. These are all amazing tools.

12. A G button or feeding tube sounds scary but it can be a huge blessing in disguise. You can give medications without fighting or throw up.

13. Lots of momma's are here with you and always available for you to ask questions or reach out to.

That's just a few tidbits I thought I would pass along. 

So has anyone set their goals for 2019? I have sat down and thought about what I really want this year and these were my top 5. 

1. For the first time in years, I want more time for me. I also want quiet time to be with my husband that’s not riddled with sadness or tragedies.
2. I plan on getting in shape again and by April. Seems short but I can do it. I have before.
3. I would like an amazing trip somewhere filled with history like Italy.
4. I’d like to help Emily reach her goals
5. I will have the best year at work I’ve ever had

What are your goals? Share with us. 

Do we really listen?

Sometimes I believe truly listening to another person is an art. I have poured my heart out over the last few weeks about an issue coming up in our lives and I feel like no one is listening. So I sat down this morning and started contemplating what it truly means to listen to someone else, I know I have failed to properly listen to people and I know women speak with emotion which can make it more difficult for men and others to sometimes comprehend the message. 

However, if we truly listen I believe it can help relationships grow, it can help you learn, it can help you heal emotionally and help others heal, and it can stop arguments. It can also solely help people obtain happiness and that's a huge accomplishment. I know more than once I have asked a friend that was upset, "did you talk to them about it?" and the answer is generally no. I think when we don't listen or properly communicate we are basically saying that person's feelings don't really matter. That there well being doesn't really matter and that's not okay. 

I read a quote by Stephen Covey that said, "Most people do not listen with the intent to understand. Most people listen with the intent to reply." Profound and true. So which applies to you? The ability to listen and understand or listen to reply? Does others happiness mean much to you or is your main concern just satisfying people and moving on. 

What inspires us?

I know it's been a while since I have written. As my aunt says life has just been pretty lifey lately and I have been overly busy. The good news is my eye situation seems to finally be resolving. I did see a new neurologist that I absolutely adored! She did multiple tests which concluded that whatever affected my face attacked my 5th, 7th, and 8th cranial facial nerves. That would account for the paralysis, swelling, and the ringing in my ears. She was honest and said we may never know what virus caused this issue or if this is an underlying autoimmune disorder that's not registering on the ANA. She did order another MRI and a host of other tests but I have taken a step back and I am wondering if it's all worth it if we will never know. So I am waiting to see if the situation is truly improving before subjecting myself to more tests. Right now my eye has not swollen in about two weeks, it just twitches and the pain is much better. 

So obviously this time of year isn't the easiest for us but we are here and grateful for Emily and all those around us. We miss Jude terribly and I honestly also miss having a young child to share the wonder of Christmas with. I still frequently think about adoption but we will be taking in Mike's mom and his brother so I am not sure it's an option. I still have time so it's still something I think about. 

Emily shared a video yesterday and it inspired me and also made me think of Jude. No matter how much pain Jude was in he always tried to muster a smile for us and was always so inspirational. I encourage everyone to watch this young mans story. I love the guy that does Special Books by Special Kids and how he spreads the children's inspirational messages. When we as adults get down due to our job, bills, relationships, or daily woes it's generally a child that puts life truly in perspective for us. They remind us to work on gratitude, loving ourselves and others, and giving all we can to the gift we have been given in our health and life. Sometimes we get so down over things that are truly minute in comparison to what these children endure. I also see that many of these kids believe in themselves more than we adults ever believe in ourselves. It's a reminder to stop and enjoy the little things, to not accept anything less than you deserve, and to always give back. So what inspires you? 

I hope everyone has an amazing Christmas. 
Happy Holidays everyone from our family to yours. Love Jenn, Mike, Emily and Angel Jude. 

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. 

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! 

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. 

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! 

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! 

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

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. 

Ilness Update

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. 

I got the flumonia..........ain't nobody got time for that!

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.