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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.

Hugs!
Jenn
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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!
Hugs!!
Jenn
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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.

Hugs!!
Jenn
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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.