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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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Friday, January 15, 2016

6 days of steroids...

My convo with hubby as I am on day 4 of Medrol Dose Pack (MethylPREDisolone)

Me: I feel so good right now. Very little pain. I mentally feel great. Why can't I feel like this all the
       time? Damn it! Why can't I feel this way all the time?!? I know once I stop them I am going to
       go back to what I was before.
Hubby: (Looking at me compassionately) Just enjoy it Jenn.
Me: I go thru this every time don't I?
Hubby: Yes, babe.

He was right! I do go thru the same emotions when I am taking steroids. I don't know why it has taken me so long to figure it out. AND I came to realized that each dose has a different effect on my emotions.
First, let me tell you about this lovely flare. It has been a very long and drawn out one. It started simply with just not feeling right. It wasn't depression. It wasn't severe pain. I just noticed that the fatigue was starting to get worse. My endurance was getting very very short. After a few days, I stupidly attempted to clean up water that the broken washing machine decided to spew out all over the floor. As bending over, Sciatica went into over drive! My right leg, down to the calf was numb and the samurai sword like pain (because saying stabbing knife pain just doesn't give it justice) pierced my lower back, hips and down to my toes. Awful!!! And yet, I still was in denial about a flare. Few days later, still not bending over, not doing much at all, I noticed the Lupus Rash was starting to come out on my arm and the back of my head felt like it was on fire. Ok, fine! I am having a flare!! Time for steroids. Even though the pic below doesn't look as bad, it was the other symptoms that truly kicked my ass this time.

Day 1: I am so over feeling like crap. In pain, very fatigued, Lupus rash feels like a horrible sun. I  am  so happy that I have an "as needed" pack in my medicine cabinet!! I am going to feel so much better!! Love my steroids!!

Day 2: Ok, so what happened to the spurt of energy you get with these sum' biotches? All I want to    do is sleep!! Still feeling like crap and my rash is looking very angry!

Day 3: Feeling better. Still fatigued but not that "gnawing not wanting to move to lift the tv remote"   kinda of fatigue. Pain, is better and rash is pretty angry at me.

Day 4: In the morning: Pain, better. Fatigue, better. Rash is clearing up. It doesn't feel like I just taken a Brillo pad across an open blister and now my mind is racing.
In the evening: Very little to no pain. I WANT to do laundry?? There's that little spurt of  energy I was looking for the other day! I feel so good! The best I have felt in 3 weeks! Damn, I feel good. This is not going to last. Why can't I feel this way all the time? This sucks!!! This is how I should feel every single day! I'm angry at this point! Why do I have to feel like crap all the time and then now that I am feeling good, it's not going to last? I am going to go back to the  same, painful, fatigue ridden, bitchy self! I hate you steroids!
Day 5: Also known as the "I want chicken wings or I am going to fight someone" dose. I am so frickin hungry! And, WE ARE OUT OF POTATO CHIPS!! UGH!!! However, my pain is minimal, which is so awesome! My mind is racing. For instance, I have about 12 different topics in my brain what to write about. I start off with one topic and ooooooooh.....squirrel!! Not to mention, I look at my dose pack and realize I only have one more day. Saddens me.

Day 6: Still hungry. Still have minimal pain. Still getting spurts of energy for I have to tell myself not to over do it. Fatigue is less and endurance is more. Just finished the last dose and looked at the empty pack that I'm about to throw away and think, "Reality will be back soon. I will be back to the pain and fatigue that just runs me down mentally and physically. I hate this.".

So, this is me on Medrol Dose Pack. The ups and downs. Feeling great yet disappointed that I can't feel like this forever. Interestingly enough, I never remember what I go thru when  I am not taking it. It usually take 3-4 doses for me to remember. With the exception of the time I really, really, really wanted to fight some one, anyone and eat chicken wings. Like 2 baskets of chicken wings.


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Tuesday, January 5, 2016

Little late but....

May the new year bring you less pain, less fatigue, less frustration and more happiness!!! Thank you for reading my blog and my New Year's resolution is to focus more on it!!