Monday, May 21, 2018
After a loonnnngggg weekend wait and a day, Neuro called. It didn't go that well but none the less. No seizure but* my body is reacting and doing the exact same thing as a seizure. But no clue why. I think they will be going back to the drawing board again. However last night when my migraine hit me like a ton of bricks. I had a lot of fluid go down my throat and out my nose. Over three Kleenexs of salt water. After I let that stuff, whatever it is drain out. I felt so much better the pressure went away and I could feel it coming off my brain with letting it drain out my nose. No, it's not allergies or typical "drainage", I know what that is. (This occurs after I'm very symptomatic. It occurred after my last "involuntary muscle" issue. So long story short. I may indeed have a nasal spinal fluid leak. So we will be testing for that issue. If that is the case it will need repaired. But there are so many serious symptoms not answered currently.) The spinal fluid leak even if it is occurring doesn't answer them as well.) I am not very happy right now about this. Fevers, and scary symptoms are not my cup of tea. I know something is very wrong and I will get it figured out this time. They told me not to loose my spunk. Well this is me not loosing my spunk and fighting. It gets me far. The doctors have admitted it many times when I was well. Well not I am sick again and they aren't so happy about it anymore. What makes me well? Fighting. Never quit your fight and NEVER ignore your gut instinct! I promise it will always lead you where you need to be. God has been talking me through this fight. I don't have the answers but I'll get them, and I know it will be alright as much as it seems like it won't right now, it's all good. This is just one of the many many blessed tender mercies this weekend. Coincidence? I think not!
Friday, May 18, 2018
Last week I woke up in the middle of the night in what appeared to be a seizure... I remember three tiny bits of it... Neuro was concerned and put me on IV steroids immediately. Also accompanied by a POTS flare, cyclic migraine, and a fever. The round of IV steroids did help a lot but the side effects were severe. Since the dose ended I also have the fevers and symptoms returning. My Heart rate is super high lately to the extent I dropped 3lbs in 3 days. (Feels like I'm constantly doing cardio workout. Oh wait I am!) I tease the POTS workout Regimen works wonders 😉 Today was awful but I wore my "Not today Satan" Tee so.... I'm not sure if I asked for it. (Wink.) I went to Neuro. For my EEG since they thought I had a seizure last week. Welp, they duplicated the episode by using a strobe light. (I was fine until they strobed me. It lasted a solid 30 minutes. (Of convulsing and the whole works.) I loose memory after these and I can't talk properly, among many other things. The tech said nothing showed on the EEG as far as she could tell but, she did have to grab the P.A. Something is clearly very wrong, but yet again I've stumped the medical professionals. Seems to be something muscular? I don't know if it's related to my Dysautonomia? I got sent home (no doctor there to read anything.) and I sincerely hope this NEVER happens again. Two in a weeks time, is two too much of whatever this is. Monday I will know more. I hope. Now I guess to worry all weekend about what could possibly be wrong. I'm trying to put it in the Lord's hands. At least they were able to see what occurs. Now they can take my complaints more seriously, and figure it out. Keep on keeping on -Chelle
Saturday, May 12, 2018
Sometimes we have to feel alive in order to feel the gospel of Jesus Christ in our lives. To live, to feel, to love, to appreciate the simple life. Feeling the sun heating your skin, and the wind in your hair. Wearing a smile upon your face with bright happy eyes. Happiness beaming from your soul. When we find true happiness through the savior and his atonement, we can truly let our burdens be put as ease and feel complete as God intended us to be. We can set our worries aside and breathe in a nice deep breath of fresh air filling our lungs, pumping is full of live. We can be freed from sin and adversity. I feel so connected to the world yet, I've never felt stronger to the other side of the veil. Wrapped in God's love for me, feeling the Angels around me, feeling true love, compassion, His spirit in my heart. That's home. That's true peace and rest. That's how I know and have a deepened testimony that Heaven is oh so real. God is there in the details of our days on earth. It's happiness. It's home. It's oh so familiar. It's sweet releif that one day wholeness will be mine, and that I have a plan, a purpose eternal. -Chelle
Friday, May 11, 2018
daily IV infusions. He says that I have autoimmune POTS. Since when I fever with my onset flare up, clearly the immune system is active. My body is attacking itself. Despite the IVIG and Immuno suppressant therapy. In August what happened, was I started having clear Sjögren's syndrome issues progressively. (I am currently suffering from Sjögren's syndrome.) but isn't it interesting the Sjögren's started all of this past on the essentially? I agree with my Nuerokogist, I have autoimmune POTS. I also see the correlation between Sjögren's and POTS as we know there is a chunk of info. out there stating that POTS can be caused from Sjögren's attacking the ANS, or at the least we know it is a cluster condition with POTS. If it quacks like a duck, it's a duck. I am trying hard to stay in the pathways program despite being so sick. I have done very well but, I struggle obviously with attending the gatherings. I'm on my last semester. Disability doesn't need to define us and I will keep trying, and fighting everyday. I had a case of the nerves lay night about today's infusions and I also realized that my port will be accessed all week. I dread having it accessed for several days. I can say with the physical decline, I miss my old body.
But my new body teaches me a lot about the path of true resistance, and anchors me in this life. Everything happens forms reason. For now I endure the bad days and really find joy in simplicity. I had a good day during the day time yesterday. (As photographed above.) Though in the evening, like clockwork, the severity of my illness occurred. I was able to get out of bed and get ready for the day. I haven't out makeup on hardly at all lately. People think if I look okay I'm fine but truly makeup is a coping mechanism for me, not a way to measure my health. You can't see my kind of sick by looking at me. I was outside for a minute enjoying the beautiful sun when the spirit nudged me... "The sun will always shine again." And I promise you it will. -Chelle
Wednesday, April 25, 2018
I'm sorry I haven't been keeping up on my blog posts at all. Like I said last time... My life is crazy for Multipule reasons. Some which I can not share right now but one day. Then to get as dysfunctionally ill on top of it. It threw me off. Morphine normally helps these blogposts as you have all witnessed the two hour post surgery blogposts. (That's a joke but a true story. So ya know! I get on this lovely iPhone that I am so blessed to have after surgeries or in the hospital and, I dispurge every detail of my life that day. Then several days later I find these posts and I cringe a little... But then I laugh.) So two surgeries in two days. BAD idea! I in no way encourage this choice. I checked in for surgery #1 for replacement of feeding tube and endoscopy. (The little surgery.) I no joke... They gave my feeding tube to another patient that week. They went "oh that little redhead is coming in, let's give her tube to this other person... We will get her another one. She will never know." BUT they did not get it in time and they had to tell me the truth... You guys I waited many hours in pre op for them to get this feeding tube. Then they spilt my urine sample. Which I told them no use crying over spilt urine. There is always more. Right? (The down side was the lab took anothe hour to run the test before I could go to the OR.) I would like to say that's the end. But I woke up from recovery and no joke this elderly lady who volunteers was waiting outside the bathroom door with a wheelchair. (Disclaimer* I have nothing against the elderly. They are lovely people whom I am grateful for. They paved the path before us. We would be nothing without them.) I walked out of the bathroom and she snatched me! She grabbed my very sore side and almost pulled the feeding tube. I grabbed her hand and removed it and told her not to do that ever, and explained you don't grab patients... especially ones who just had surgery. (She looked at me like I assaulted her.) Then little did I know I was in the wheelchair ride of my life. Holy guacamole you guys! Then she told me to get out of the wheelchair sideways to get into the vehicle. I tried to explain to her my feet don't touch the ground if I attempted that and I would be diving off and fling myself off and probably fall on my face. She argued with me but I just did it the proper way. I protected myself. Luckily even with sedation on board I have safety. I'm glad nothing happened because she couldn't help me at all. All I could think getting into the car was, "if I fall you're going down with me." Luckily no one was hurt and I made it to the hotel safely. But this is where the day changes... We get to the hotel. We pull up my mom drags this mess out of the vehicle walks me in and checks in. There where two younger men there at the desk they check us in. But they were polite. Isn't it amazing how simple common curtosey can be such a game changer!? The boy took notice of my beautiful hospital bands and they offered to help us to our rooms. We declined but it was just so refreshing to have some human kindness. (I always say be kind. Be brave enough to open a door, or give a compliment. In today's world it's hard. I don't know why but it's uncomfortable. But do it! You can change a person's day and it's contagious.) When got to the building and up to our room, we walked in, and it was dirty. Oddly dirty like someone came and showered then made a big mess with towels all over the room. Anyways, my frazzled Momma who as well had a rough long day. Looks at me and goes, "I have to walk back with all our luggage to the desk?" I thought she was going to cry maybe... So I luckily had a good idea! And I said, "Mom grab the phone and call the front desk from the room." So she calls. The manager came to us and, looked in the room. (Like we did... It was an interesting mess.) He apologized and helped us to the other floor, to our new room. We weren't mad at all. Things happen. But this guy was so kind he said, "I'm waiving your room for tonight." And we told him, "no he didn't need to do that." but he said, "I can see you've had a long day and this is not exceptable here and I insist." I can't explain how much that act of kindness meant to two worn out ladies. He told us he noticed the hospital bands and said well you're out of there so that's a good thing. We giggled and explained we were there because I had to be at the hospital at 5am the next morning for another surgery. (I am impressive folks.) We thanked him and got settled in. My mom was SO tired and hadn't eaten all day. She was going to have to walk through several buildings and a block away to the vehicle to get food... But because they waived our night I told her she could afford to do room service... That way she could rest. She did and it was a blessing she could rest and eat dinner, (her only meal that whole day.) especially with a full surgery day ahead of us the next morning. I know the hotel could have just changed rooms for us. They didn't have to be kind and they definetly didn't have to waive the night's fee. But it was a tender mercy on this particular day and we are both grateful! Friday morning I checked in and had my surgery. I was pretty pale that morning and my surgeon said after the fact that she wouldn't have done surgery again if she could go back. Surgery itself went great. Micro Endo and an ovarian cyst removed. Lots of physical therapy ahead. (That stinks major!) but they cleaned things up and she said I don't need to go under for a long time. All wonderful things to hear. The post op nurse wouldn't listen to me. I told her that I was staying overnight and she was not following my surgical plan at all. Nothing she said made sense. I kept telling her this. But she told me my surgery wasn't that bad so I was going home and that I didn't have Endo just a cyst. (I have diagnosed Endo and Adenomyosis. This was surgery#4. It's bad now.) She took my cath out as well. I told her not to. I asked her to check first because none of this made sense to my surgical plan. She didn't. She took my cath out. I couldn't pee for hours. I was miserable for hours. She finally put it back in and guess what they were keeping me. With Dysautonomia the body takes longer to wake up from anesthesia. Your organs go to sleep as well in surgery and they wake up too, but in Dysautonomia we get urine retention a lot from the drugs. We need a day or so for our organs to wake up again. So they cath me for 24hrs. Which I prefer then the alternative... But she just wouldn't listen. Then I got to my room and all was well as could be. Next morning at 4am they took my cath out. I questioned it because it hadn't been a full 24hr period. I spent the day not fully voiding my bladder which is bad for your kidneys they get backed up. So that night they decided to re cath. The nurses couldn't get in due to too much cathing causing inflammation. So they tried putting two in at a time?. (If I would have known. No way. No how... But I didn't. It didn't even make sense.) A long time later they failed and called the doc in. She was mad at those nurses. (No one knows what they both were trying to accomplish. All they did was injure me.) we waited hours due to the cuts and inflamation the nurses caused. Later the doc came and put one in. They left it in for a few days. The doctor said I would have been able to urinate fully on my own but all the putting in and taking out of all the caths unnecessarily caused inflamation to where I couldn't pee.) So, I went home because we then had to wait for the injury they created to heal! well to family's house closer to the area and days later came back to get it out. All is well again.(I am aware of this embarassing story but hey it happens a lot apparently to people.) My surgeon is not okay with the treatment I received and they did hurt me by being wreckless. Recovery has been tough and I'm still struggling. I'm still in bed. I wish I could just have 1 normal hospital stay for once. Being sick has built up lately. I had a horrific migraine cycle in November that they thought was a stroke or spinal fluid leak! Such a scare. Then my Gastroparesis became severe and I starved all January, resulting in getting my feeding tube back. Then I spiraled severely with Endometrisos to the point I was in massive pain and they booked me for surgery ASAP. I pray now I can get back onto my feet and regain strength. It's going to take time if things go right. I am fully deconditioned. Since surgery when I stand my heart burns because I have POTS and I'm that severely weak. I am proud despite all of these things, I did not quit my class. I had an A up until the last two days... I got a C all due to the surgery. My teacher was supposed to waive a few things and she didn't so I am praying it gets fixed and I get at least a B. It was discouraging to work so hard and loose that A over my body not working right. When I was 19, I took English (same class) and I had to drop out that semester to have this same surgery. So that's been my big fear is to fail out of school. It's just one class but for me that's a lot. I'm not normal. I don't function normal and that makes me so mad. But there is a reason and my advice to you sickies out there who are struggling... Let yourself hurt. It's okay to break sometimes. We all do, and if a disabled person tells you differently, they are lying. Being chronically sick to where you can't function is hard mentally. Just remember you are not failing at anything if you do the best you can (even if that's taking a shower for the day.) you have not failed. And even if I fail out of school, I would like to share a lesson I did learn in life. I think we all need to hear this lesson! When I started my school I was SO afraid I kinda locked up. I almost convinced myself not to do it. But a wise person asked me something. "Would you rather fail because you never tried and wonder your whole life what if, or would you rather fail out of class knowing that you tried despite everything." Take the chance! Don't let yourself wonder for the rest of your life "what if". You can not fail as long as you try your best! Life just redirects is and sometimes things don't work out for unknown reasons. But God has a plan for you. Trust in that. Believe me I wonder why I'm here a lot of these days when all I do is lay in my bed. But I assure you we all have something to do here... Otherwise we wouldn't be here now would we? Trust in God and keep trying. He never said it would be easy he only said it would be worth it! Let yourself hurt, get mad, but don't give up on yourself. Love always -Chelle
Snapchat filters really do help the recovery process. Hahaha! (I don't remember taking these but I looked like I was having fun right?)I may be bruised but I'm not broken.
I thought I'd share embarrassing surgery stories/updates.This picture below is hideous! But I have been SO sick. SO pale. (More then my redhead pale.) SO much pain. SO much weakness. This has been a tough recovery! I haven't even felt like posting until today. I've been in bed. If I can't even post, you know it's a toughie.
Monday, April 9, 2018
allergies, medical equipment, and medical conditions. (I best get some brownie points for these well organized and detailed lists.) I counted today that I have 15 medical conditions!!! FIFTEEN! The next time a doctor pills shames me, that's going to be the new response, "FIGHTING FIFTEEN." If you ever get pill shamed by a medical professional who doesn't know your case or anything about you or your conditions... Stand up for yourself. You are your best advocate, and a lot of times Hospitalists just don't have the knowledge. So, speak up because you may teach them a few things, for the next patient. I always make them go over my medication list with me. Then as we go over it I ask what that professional would remove. (They always end up to their own suprise stumped and have nothing to remove.). That's when I get to educate. Pill shaming does no good for any person who is chronically ill. I take as little as possible and I'm on too much I agree! But I don't have a magical cure and life gives us trials. Sometimes when cures don't exist you have to do what you have to do in life. Like it or not. I mean do they think I enjoy keeping track of all of these things! Answer: "Nope!" . I have 15 medical conditions! Now that is CRAZY!!! Harsh realities but comfort knowing God always gives us what we can handle. -Chelle
Saturday, March 17, 2018
I thought I would do an update. Since some days you have to sit with your feet on the dash outside of your Neurologist's office and ponder your blessings. (While you recharge your energy.)