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Thursday, March 29, 2018

UTI and Autonomic Dysreflexia

Auto...what?!? Autonomic Dysreflexia (AD) or Hyperreflexia is a condition in which your involuntary nervous system overreacts to external or bodily stimuli. In other words, the things in your body that you cannot control (ie...blood pressure, heart rate, breathing etc...) goes all out of wack when there is the simplest of problems. This is commonly seen in people who have spinal cord injury but also in those who have Multiple Sclerosis, ALS or Lou Gehrig's Disease, Guillian-Barre and Parkinson's. Also, medications can cause this to happen too. Causes of AD can be as simple as too tight of clothing, bladder distention, UTI, kidney stones, ingrown toenail and sexual stimulation. (HA! Not tonight honey, I have Autonomic Dysreflexia!)Always call 911 at the first sign...not the *cough *cough third. If left untreated it can cause stroke or heart attack.
This is a medical emergency!
Click here to learn more about AD

It was a Sunday and I woke up actually feeling refreshed and little pain. (Should have known it was too good to be true). Hubby and I enjoyed a nice lunch out without the kids and on our way home, I felt a twinge in my belly. I thought it was IBS (Irritable Bowel Syndrome) because I had just ate and like clock work, I have to go to the bathroom. Thought nothing of it. About a hour later, I felt that twinge again. Ok, have to potty. Then all of the sudden, I couldn't see straight, my head was pounding, my heart was feeling like it was going to come out of my chest, I was breathing very hard and had this pain in my neck. Thought maybe straining while using the toilet was the problem but I wasn't straining that bad. This passed. I made it out to my chair and I sat there and thought "That was weird.".  10 minutes later, twinge in belly and holy hell all the sensations happened again!! But stronger!! Went back to the bathroom (I really don't know why I thought it was IBS at this point.), sat back down and thought "Maybe I should call 911? Am I having a heart attack?". It subsided,went back to my chair, worried, and pretty sure I should have called 911 after that one. But no, my stubborn self waited 5 minutes later after the twinge and the sensations came back for the 3rd time. My blood pressure was 194/95 and heart rate was 102. I just wanted to lay down. I couldn't keep my eyes open. My speech was slurred. Words kept escaping me. At one point I remember thinking that I felt drugged. My mouth became instantly extremely dry. Like I haven't drank anything in a week dry. I knew something was very, very wrong. In the ambulance, the paramedic tried to start an IV. I am and always have been an easy stick. Not this time. My blood vessels clamped down and he told me I was dehydrated. How the hell was I dehydrated? I drink? Hell, I just came from lunch where I ate and drank??
Once I was at the hospital, I tried to explain what was going on. Twinge became abdominal pain from the paramedic and I was desperately trying to say it was not abdominal pain in the traditional sense but my brain was not cooperating with my mouth so it took a bit to let them know that is was a twinge. I was able to eventually get out that sometimes I will have a UTI and not know it and that it causes neurological symptoms. Doc ordered tests along with testing my urine. As soon as I seen my urine, I knew it was a UTI. So, that got my nursing brain working. The twinge was my bladder having a spasm. Every time my bladder would spasm, that would send my autonomic system into hysterics. Increased my blood pressure, heart rate, made me instantly dehydrated, clamped down all my blood vessels which made it almost impossible to draw blood for tests. Of course since my brain and my mouth would not work together, all I could get out was "Autonomic problem damn it!".
I seriously thought I was having a heart attack. I didn't know what was going on. Scared the hell out of my kids and hubby. Scared the hell out of me.
Sure enough the urine analysis came back as did my white count. Positive for UTI and white count (indicates infection) was 23 (3.5-10.5 is normal). Friday before this happened I did have steroid epidural injection in my neck which helped increase that white count and fueled the infection.
I was given the antibiotic Levaquin, Pyridium (Phenazopyridine or Azo Standard) for bladder spams and Zofran for nausea.
I feel much better now. I know I had to make some changes. Decreased Pepsi aka my crack, increased water. I really hate water so I bought the flavoring drops to add to it. I'm such a kid at heart and was so excited when I seen this...
No sugar, no calories and it's actually pretty good. Quick tip, don't follow the "1 squeeze per 8 oz of water". I have a 24 oz cup that I drink from. You only need 1 squeeze!
Since I don't know when I have a UTI because I don't have the normal symptoms, I bought UTI test strips for home. Once a week for now and then I'll start every other week. Just helps me to get a jump on it. You can get these from Wal-Mart fairly cheaply. Click... here for more information on ordering test strips from Wal-Mart in the US.

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Friday, September 22, 2017

How this little guy made a big difference in my life...

Having a chronic illness that takes a lot away from you. Independence, career, driving, sense of purpose. I felt that way. I know, I know... I'm still alive and someone else has it worse off than I do but I did feel that I had no purpose anymore. Until I met Connor.

Connor McGregor to be exact. Yes, hubby named him after the UFC fighter however, I call him Monkey because he climbs furniture like a spider monkey.I had no idea how he was going to change my life when he showed up.
We received a call in March, from a friend who runs a rescue, asking if we would want a 2-3 month old beagle. She rescued him from an "alleged" abusive home. Connor was underweight, skin was terribly dry because of improper nutrition and grooming and yet he was still the sweetest puppy. I've never been a fan of owning a puppy . Don't get me wrong, I love to cuddle them, play with them and leave them to their owner. I always preferred to adopt a dog who was at least 2 years old. That was when I was working 60 hours a week, kids were young, busy, busy busy. So, I never had the time nor the patience. After hearing Connor's story, Hubby and I talked it over and decided since our other 2 dogs are 14 and 11 years old, that maybe this was a good time to get another. We are such suckers! But really, could you say no to this sweet little face?
His camo hunting hat!

We quickly noticed that when Connor was chewing on something he wasn't supposed to have, that we had to change our approach. We couldn't just jump up and yell "NO!". If we did , he would shudder down to the floor as if we were going to beat him. Broke my heart. Actually made me cry that first evening. How can someone be so mean and abuse this sweet little puppy? I will never understand.

Connor and his bff Buddy

We had to really think about correction, potty training, feeding times and get a routine down. With all this, it gave me a purpose again. I was able to teach and love him without completely exhausting myself. He has given me a great sense of accomplishment every time he sits, rolls over or gives me 5 on command. I have also started teaching him to get my cell phone off the table, pick up items that I have dropped and to get his harness out of the drawer. So we decided to make him a service dog. He goes everywhere with me.
Connor was meant to come into my life. I have never known a puppy that will stay in bed with you until noon because you don't feel well. During an exhaustive flare, he is calm, quiet and loving. I know he senses that I don't feel well. He has brought me so much joy that I didn't know that I was missing. I didn't realize the depression I was in. My family has even commented how much Connor has done for me. He gave me the sense of purpose again. This little, abused, starved for love puppy that needed me as much as I needed him.

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Friday, October 14, 2016

My Solu-Medrol Journey Day 3 and into Day 4...

Yippee! Done with the IV doses! Sweating like mad. Have the lovely steroid glow going on. My mind still seems clearer than it was before. But the pain is really kicking my butt! What happened to the pain relief? I truly think that my joints don't know what to do now since the steroids are calming the inflammation down. AND apparently there is a nerve in my lower hips/sacroiliac joint that likes to shoot down into my "bejingo" (Fans of the show Scrubs will understand).
I was a smidgen irritated when my family would speak to me. I think I held it in pretty good but OMG if one more person said one more word, I seriously thought I was going to lose it. It made my skin crawl. I held in screaming "SHUT UP and WHY ARE YOU BREATHING!". Happy to say that everyone survived and hubby worked VERY late. However I did have a nice night of sleep. Wasn't uninterrupted but it was still nice. Of course I did not wake up refreshed. Why would I even think that would happen?

I did realize today that all along I should have been taking Pepcid that my neuro prescribed to me with the taper dose. I have no idea why I forgot that I was supposed to take it during the IV therapy. Would have made a huge difference. IV dose does cause increase in stomach acid and I noticed that food tasted different to me too. Sis brought me home a yummy quesadilla with jalapenos. OMG it was delicious the first time I had it. But last night, I couldn't eat it. It was like the jalapenos were super infused, making my eyes pop out of my head. Cleared my sinuses though.
Aside from the increased anxiety, heart palpations, flushed face and lil chest pain, I just don't know about other people who take IV Solu-Medrol get a bit of increased depression. I am not sure if it is an effect of the medication or if it gives you a feeling of false hope. What I mean is, Solu-Medrol makes you think that you are feeling "normal", how it should be. Spurt of energy, lessen pain (fingers crossed), mind is clearer and you have an urge to be active. It reminds me of what I once was. Working, cleaning, taking care of family, going on vacations.  How much fun our family had together. I suppose Solu-Medrol is an evil double edge sword.

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Thursday, October 13, 2016

My Solu-Medrol Journey Day 2

Day 2...
Wide awake on 3 hours of sleep! Holy crap! Momma needs her sleep. The entire family needs Momma to sleep lol Comes along with the territory of taking IV Solu-Medrol.
Obviously my mind is more alert and I have noticed that my thinking is clearer.  Over the past 6 weeks I could not use my brain. Very, very simple thinking tasks were very difficult. Feels like the fog as slowly been lifted. My speech is still off at times. Wrong word chosen or slurs altogether. But whatever.

I do have more pain in my hips and knees. I think they have been inflamed for so long and now the steroids are easing them up they don't know how to react. And of course my stupid body's first defense is causing me pain. The feel of my headache is unusual for me. Just a constant ache that is just enough to make you feel miserable. Pain in both eyes, forehead and temples.
Strangely enough, I began to wonder last night if I was getting a occurrence of  Optic Neuritis. Pain was hitting that left eye. I had to stop and think... "No, can't be. Must just be the Uhthoff's"  because of lack of sleep, it was getting late and I was finally feeling sleepy.

I will say the Jolly Ranchers and seedless grapes have made a huge difference. I start eating a few grapes prior to the infusion then finish the rest during the infusion. Then suck on the Jolly Ranchers. But I will say it does NOT take the nasty taste in my mouth completely away but does make a difference. Plus I love grapes and Jolly Ranchers lol
I am feeling a bit stronger with walking. I don't have that fear that I am just going to hit the floor. Endurance is still very low which is challenging. For the first time in 6 weeks I am mentally feeling better and know that my house is a disaster. I have to fight the urge to clean. Again, the fight between my mind thinks one thing and my body just laughs and says yeah right. Good thing I have teenagers to spout orders to lol.
9 am next morning and going into day 3.
I can say I did sleep last night. Woke a few times but fought to go back to sleep and it worked. I just need sleep. I do have lower back/hip pain that is shooting into my rectum. Fun stuff. Knees are still aching. Though on a good note, the headache is almost gone. I am hoping to nap today. Wish me luck!
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Wednesday, October 12, 2016

My Solu-Medrol Journey...Day 1

Little backstory, for 6 weeks now I have had an awful flare. Unrelenting! Very worrisome. Fatigue was severe. Back to needing help to walk 15 feet to the bathroom. Started having trouble swallowing to the point of choking. I was so grateful that my hubby was home. It had gotten so severe that I was really scared. I could hardly move. And when I did the pain shot through my whole body. Even to move my extremities and they felt so waited down. But the difficulty swallowing really scared me. We went to the ER that night and I had explain to them what had been going on, the new symptoms I have been having and that I had had a UTI before and it causes neurologic worsening of symptoms. I explained that I don't have is the normal UTI symptoms. The burning upon urination and the urgency to go. I get the neurologic symptoms. The doc said sure we will check your year along with some other tests. They sent me home after they gave me a dose of IV steroids, shot of Toradol and a Higher taper dose of steroids. That was in mid August. As time went on I was not getting any better. Actually I started regressing more. Became very depressed. I really couldn't leave the house because it was just a chore to get myself dressed. I had to have help in order to take a shower. Finally after about a month I was able to see the MS specialist up in Cleveland. And at this point I was just down in the dumps and I just cried. I didn't know if this was a new plateau for me. My doctor was very understanding and I think she was also very concerned. I explained that I had gone to the ER and I told him about my previous UTIs and what it does to me. She looked up the labs and said "Well Jenn you may have had a UTI but we don't know so we are going to retest your urine.". Sure enough I did. My MRI that I had done the day before remain stable but it did show more lesions of what I had thought I had. But I still yet do not meet the full criteria to have the actual diagnosis of multiple sclerosis. However she did give me a generic I'm specified the myelinating disease and I really don't know what to do with that. Well I try to make a small backstory but if you've been reading my blog for a while you know that really isn't no small story. So let me explain about day one of the Solu-Medrol IV.

Solu-Medrol 1000mg IV x 3 days Eclipse ball which is already calibrated to drip at the correct time. Mine will take a hour for each dose. A home care agency nurse will come to the house to administer. After it is completed I will start a taper dose of oral steroids and Pepcid to protect my stomach. 

First, a few things to know. 
1. Be sure you keep the doses refrigerated. Must be kept cold but you can remove one dose a few hours prior to arrival of your nurse so it won't infuse cold. 
2. Hard candies and sweet/sour fruit!! Solumedrol has a nasty taste and doesn't go away. Jolly Ranchers, cold seedless grapes and mint gum help. Lemons/Lemon flavored candy or sour gummys work well too. (Sour Patch Kids are awesome!)
3. If you need an IV (Hep-Lock) placed in your arm, chose your non dominate side and do not place it at a bend. Like at the bend of your wrist or mid arm. 
4. Drink plenty of cold water. Ice chips help too. 
5. You will probably have an oral taper dose of steroids when you complete IV doses. You can't just "cold turkey" steroids. Your adrenal glands are not a fan!

Day 1: My home care nurse was rather interesting. Newer, greener nurse perhaps. Of course I neglected to tell her I was a nurse myself and there is a reason I do that. I NEVER tell a healthcare professional that I am a nurse at the first meeting. That way I can really see how they practice, what they know about disease processes and medications without them knowing that I know right from wrong. Easier for me to weed out the idiots. Sounds harsh but I have been going through this for so long and I'm done playing around. So, she kept referring to the medication as an "antibiotic". She also made 2 comments about the purpose of the steroids is because of a UTI I had. She looked totally perplexed when I said the word "demyelination" lol. Pretty much have her figured out. 

Dose 1: The nastiest, most God awful taste in my mouth that I totally forgot about and forgot to take the dose ball out of fridge, so it infused cold. Oops. 
Heart racing, bounding palpitations. Little chest pressure. 
Sweating like I just ran a mile or for me after I take a shower lol
Feels like it's 100 degrees in this damn house!
Little spurt of energy but mainly anxiousness. (Maybe even a little manic too. lol)
Constant dull headache. 
Weird because my hip and knee joints ache and feel like they are on fire. Must be from all the inflammation in the joints and the steroids are beginning working on them. 

3 am--- Scent of skunk spray filled the air from a visit outside and my hubby waking me up. Mind now racing once again. Hence why I'm writing. 
Head is still aching. Swapped out my bedtime diclofenac (Cataflam) for 4 OTC ibuprofen. However I must warn you that NSAIDs (nonsteroidal anti-inflammatories like ibuprofen, naproxen, diclofenac, etc..) and aspirin should really be avoided since it can irritate the lining of your stomach. As does the Solumedrol. Tylenol or acetaminophen is a better choice. 
IV site is driving me nuts. I will have it replaced tomorrow since begging my hubby that I can show him how to place another one because it's really not a difficult task on my veins and I'm a good teacher totally failed. But whatever, I'll remember that! Oh, did I mention that sometimes Solumedrol makes you irrational? 

I'm going to try and get some sleep now. Wait, why the hell is hubby laying so close to me? Oh boy, day 2 is going to be fun!

10 am- I still haven't slept. My head is just aching. My hips and knees are like they're on fire still. Whatever can't go to sleep now nurse will be here in 45 minutes for second dose.

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*Please note the dosages I was prescribed by my Neuro may differ from your Neuro. Some docs prescribe differently. 
*Also please note that I am not a doctor nor do I play one on tv. I'm just someone who is going through this for the 3rd time and I thought I would share some of my tricks and feelings. ALWAYS consult YOUR doctor if you have questions or concerns. 

Friday, June 3, 2016

Planning a party with a chronic illness...

Finally back!!! Sorry for being gone for so long but I have been busy! My baby boy just graduated from high school and I am ever so proud!
I have learned so much about planning a graduation party while having to deal with chronic fatigue, chronic pain, Fibro Fog, etc etc.. It was both trying and rewarding.

  1. Give yourself plenty of time to plan and organize:
    1. I am a HUGE procrastinator! I think it just goes with all the brain fog, knowing little things tick me off because I can't do things like I used to so it's better to just push it off and never knowing what day I will feel good or bad. Not to mention the indecisiveness.
  2. DON'T second guess yourself: 
    1. I could have saved so much of my time if I would not have second (hell, 3rd or 4th) guessed myself. Just pick the damn date you want the party! Just pick the place! You will have other more important things to second guess yourself later!
  3. Get a notebook!
    1. This was just a fluke that I discovered. Buy a brand new (or steal one from your kids) notebook so you can keep everything, I mean EVERYTHING in it. Nothing flashy just a regular notebook. 
  4. What to write in your notebook:
    1.  Addresses:
      1. I don't have an "old school" address book or even a contact list with nothing more than phone numbers. So I had to gather  all this info from my mom and from help of Facebook Messenger. I sen individual messages to family and friends for their addresses. I then would write them down in my notebook.This saved so much time when it came to writing thank you notes. All the addresses were there!
    2. Need and Have: 
      1. Make one page for what you need to get.
      2. Make one page for what you already have.
      3. Be sure to keep it updated. Scribble, mark off, create new pages if it gets too messy. 
    3. Who is bringing what?
      1. I do not like asking for help BUT when people ask if they can help, I jumped on it. Totally out of character of me I know but it was so greatly appreciated. Now, I am not saying ask the second cousin twice removed to bring all of the meat that is needed for sandwiches. I am saying if a sibling, friend, parent, grandparent asks if they can bring a dish, say "YES!". If they ask if you need help with setting up the decorations, say "YES!". My energy was limited as was my brain function lol
    4.  Sketch:
      Never said I was Picasso!
      1. We rented a shelter house for the party. My daughter and I drove over and decided how the food tables were going to be set up. Where the cake table was going to be. Where the present table was going to be. So, I made a sketch in my handy dandy notebook. 
      2. While doing this, this also helped with counting tables, how many table covers we would need. Along with how many centerpieces were needed too.
    5. List of what needs to be done a week before the party:
      1.  This was a lifesaver. With everything going on and the Fibro Brain, this was great. I wrote specifically what I needed to do and what day.  
    6. Write down who gave what gift:
      1. This was great! My son opened his gifts at home and he would say who from and what gift and I would write it down. This way it is just a few pages away from the addresses I already wrote down for the invitations. 
  5. Online shopping:
    1. I am now in love with Walmart online!! AND orders over $50 are shipped free to your home!! I found cheaper prices on Walmart compared to Amazon. However, I did order from both. Actually going to the store, walking around, being indecisive is just a waste of my precious energy. I knocked out a big portion of party decorations, utensils, paper plates, cups, fold up table and chairs and much more just by shopping online.  
  6. You do not have plan every day:
    1. Seriously, you don't. There were days that I couldn't function because I was exhausted from all the planning and thinking. My fatigue is not only physical but also mental. Mental fatigue causes physical fatigue. So, if one day you plan, plan and plan, the next day you can't do a damn thing, no worries. It's!
I must admit, I was wondering to myself if I was becoming OCD (Obsessive Compulsive Disorder). That notebook went through many changes. Pages ripped out and rewritten. But it was all worth it.
In the end, it was a cold but wonderful party. Planning gave me a sense of purpose, sense of accomplishment.

P.S. After everything was done and the party over I was completely exhausted. I was in so much pain by the end of the party I could barely get into the car to go home. I was in bed for almost a week from the pain and fatigue. It was worth it!

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Monday, February 1, 2016

In true Fibro fog fashion....

Just looking over my blog layout and noticed something missing from the banner....

Do you know what is missing?


Flippin "Fibro" is missing of my banner! The very first thing that you see on my blog and I totally forgot to add "Fibro"?! Seriously!  Not only I forget what I'm saying, finishing a thought on a post (and thank God for spell checker) or walking thru the house for something, with 20 steps already in and I have no idea what I was going for, now I guess I can add omitting a diagnosis that I am often (very, very, very often) complaining about.

How beautifully ironic is that!?!

Touché Fibro, touché.


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