"Trying" to start Solu-Medrol, but without much help.

[michelleric]

Do you ever feel like the Karma just isn't there??  I decide to go ahead with the Solu-Medrol. The neuro's office set it up with home health care.

Was supposed to start yesterday.  I called the service as to when they will be coming.  Hmmm, no record of me.  Cant find anything about this, no orders...They call the neuros office, and yes, the orders were there. Somehow they overlooked it.

I also went to pick up the prednisone taper and the "pepcid" at the pharmacy.  Nexium had been called in and it was $$$$$.  I asked how much Pepcid was, and they said very inexpensive.  I told pharmacy I would have docs office call that in instead.

Well, 2 days later here is how it stands.

No other med called in yet, BUT it really doesn't matter.  The nurse who showed up at my house today, stuck me 7 times, and still didn't get the IV in!  After the 3rd try, she said this wasnt her "normal" job, she is the admitting nurse.  Apparently because she lives 1/2 mile from my house, she was convenient.  AAHHHH.

She said I need to go to the hospitals infusion center.  It is a blizzard here,I am having double vision and I am not driving there today.  She said I "might" have to drink it then. WTF.

Ok she left, I am totally aggravated. I called the MS neuros office, and told them to set me up with the infusion center.  they can get me in next week.

However the nurse who is supposed to come tomorrow just called, I explained the situation and she guaranteed she can get the IV in.  So, trying it again.  (I do understand she "might" not get it in either, I just really hope she does.)

I guess this is just a vent here, but I get aggravated with the medical business sometimes. Just seems like lots of incompetency sometimes.

Sometimes the fight just wears ya out.

Thanks for listening to me whine...Michelle

[Hepsibah]

Hi. I was on soluMedrol Dec 5-7 through home health. She stuck me twice then called another nurse who got it in right away. I loved doing it the home health way. They were so attentive to any changes or problems. I'd  never do it any other way, that being said, I'm not planning on using it again because it didn't help the MS, so ... Make sure you avoid anyone who is ill. Christmas eve my grandson came over with a horrendous cold or flu and I was ill by the next night and in the hospital a week later. They gave me more SoluMedrol, and now have me wearing a mask in public. Monday, the doc told me it can take up to 12 weeks for the immune system to bounce back...so don't let anyone come near you sick!!!

[renee0468]

I am on steroids this week as well. This is my first time having it done at home. Which I am never doing again! The nurse they sent out was completely incompetent.  It seemed as though she had never done this before in her life.  My confidence level was "0" 30 seconds after she walked into my house and proceeded to look flustered and couldn't figure out how to mix the steroid! How in the world was I going to do this if she couldn't figure it out.  She poked me (very slowly and painfully) 3 times before she got me.  My husband ended up getting our neighbor who is a nurse and it was very comforting to have her over see everything. She will be helping me the rest of the week and helping us remove the IV. Sorry this experience started out the way that it did.  I just said to my husband, "well, hopefully this will be kind of funny someday" Gotta laugh or else it will be cry, cry, cry. Hope your steroids do the trick and you get over the moodiness.  Good luck and God bless.

[opie74]

So, I guess that I am the only one that had a good experience with home health?  The first nurse that came was a little odd.  She wanted to leave the IV in.  I have 3 children under 6!  She called and they corrected her.  She was the nurse on call the first day. (she came the same day that I saw the doc.)  My regular nurse was Jodi.  LOVE HER.  Got it on the first stick every time!  Even brought the boys some fireworks for new years!

However, dealing with the specialty farmicy getting the Gilenya started is a short horror tell.  It only took 4 hours and numerous calls................Oh the incompitence of Cura Scr------!

[Lulu54]

The "A" months?  August I would think because of the summer weather.  But April? I'll  have to ponder.  

I'm glad you are out of time-out, or at least can sneak here to tell us how you are doing.

[michelleric]

I am all for the jammie party as well...although at this time I would not be too fun to be around.  I have turned very very bi#$@chy. Period.  I know it, I can hardly control it.  I dropped 15 eggs on the floor, fell out the frig when I opened it.

That was the beginning of breaking loose. I put myself in a "time-out" at the moment.  All my lymph nodes are swollen in the back of my neck.  (I had this in the past last time with the "roids, forgot about it.)

Any of you IVSM ladies feel like you are being squeezed.  I am in pain. Kind of like the MS hug. Pretty painful.

One last thing, Mary, I do believe for me the stress of the last 2 month or so did me in.  Started in November with missing my mom, and all the bday calls, then Thanksgiving then the holidays.

My MS neuro said the 2 biggest months for exacerbation are April and August. Dont know why.

Michelle

[Sumanadevii]

I take IVSM monthly.  I dislike the no sleep and do get emotional about silly things...Yesterday I found myself crying because my husband left a dirty cup in his office overnight...lol....He had promised to put it in the dishwasher and now we will have bugs and he won't want to capture them and set them free and now the bugs will die because he will kill them and all that bad karma will come to our home for the murders and......and.....and....so it went until I took a Xanax...lol

I am one of the lucky ones other than the lack of sleep and emotions,  my body takes to them like a duck on water.  I move better.  My pain level decrease within the first twenty four hours.  So I see the relief right away.  

I am all for the pj party!!!  My husband would love to toss me for a night during treatments...lol

[twopack]

I wonder if there is any possible connection between the large number of members with increased symptoms or taking IVSM over the last few weeks and the fact that we have just emerged from an extremely stressful time of year.  What does everyone think?  Proper research protocol probably dictates a poll........ Later, if I get time.

Mary

[Sarahsmom46]

OK ladies, we need to schedule our IVSM treatments next time and do a SLEEP OVER.  Oh what fun6 that would be with 5-6 people on steroids who can't sleep.  We'd have a blast.    

Now on to the tapering. Good luck with getting good results from all this.  

Julie

[figuerpa]

When I did the IVSM while I was taking it I felt like superwoman. When I Stopped I felt horrible and the pain returned it was about 2 weeks after the IVSM that I started feeling relief from the pain but then I went on to have an inflamed stomach so my advice it to take a pepcid or some other type of antacid to help you all.

I hope all goes well.

Michelle,

When I was on IVSM the nurse came the first day and put the IV in and I did it the other days, so I only got stuck 3 times cause the first 2 times my vein blew. The IV just stayed in until the last day. Glad I didn't have to get stuck every day. I am also glad that the other nurses are getting the IV in just fine and that you reported the first nurse.

Paula

[Lulu54]

I hope to have happy reports from all of you next week - that is a lot of IVSM going down in this group.

take care and feel better, Lulu

[rendean]

Sumana,

Welcome to the club. I think you make # 4 taking IVSM this week. My final one is this afternnoon before my daughters treat to a play downtown. At some point I need to sleep or I'm afraind my body will choose the darkened theatre to finally wind down. Hasn't helped much either Michelle but I'm hopeful for next week.

Ren

[Sumanadevii]

Hey!  I take my third IVSM tomorrow too!  However, I am not SLEEPING again and am here to bug the rest of you!  Wake up!!!!!!! lol

[michelleric]

Well, had my 3rd and final Solu-Medul this morning. Actually at this hour is was yesterday.

I feel worse, always do the first few days.  I hope next week I will be back to "normal" or the new normal for me. The last 2 days a differnt nurse came (2 actually) and they both got me on the first stick.

I called and reported the first one, and now feel better about that.

So all done and now the taper starts.

Thanks  all   ~   Michelle

Now if sleep would come I would be thrilled.

[cainer]

Wow!!   you are a great person--  i think as patient as i am, id turn the needle on them!!
  no sense in that-- i have veins that role-- so iv heard-- they have a rough time,,-need to sneak up on them!!   hope it works out for you!!  hugs  tick

[Sumanadevii]

Truly, after stick two and the idiots can't get it in, I make them stop and call for another nurse.  I go to an infusion center.  The nurses that work there never have to stick more than once because they know what they are doing.  When we arrive during a night shift, we have often been stuck (and I mean that in more than one way) with a nurse without a clue on how to get an iv started.  Like I said, two chances, you're done.  End.

[michelleric]

Thanks Ren,

Good to know about the arm hanging down.  I will tell her today.  She should be here any minute and I took a HOT shower, drank lots of water, trying to stay warm (although it is hard, when it is SO cold here. I think about 12 degrees maybe? Although not positive).

So what is happening with you today?  Can a nurse get out today?  Wish we were together, a 2 for 1 special.

XO,
Michelle

[rendean]

Michelle,
If you are a "hard stick" make sure you are hydrated...the stick will do beter, also, applying MILD heat to area sometimes helps. Other tricks in my IV bag were to have the arm/hand hanging off the edge of the bed/ table to increase pooling of blood.

I know the perfect solution.This will help 2 ways. I'll come up and start your IV and then I get the outrageous fee they charge and apply it to my vacation fund!

Sorry, you can't stick me. I'm a hard stick and currently have 8 bruises in varying shades of colors to prove it. But, I used to do very well in IV therapy so you'd be in good hands ; )

Ren

[michelleric]

Thank you all for your comments!  Shoot, I am laughing, feel like I am in the middle of a bad soap opera or something.  If you don't laugh you cry, right?!

Julie, I think I will give it 1 last try today.  If it doesn't work, I will go to the infusion center from now on.  This is ridiculous.  Live and learn.

Ren, yes, stop copying me.  I do believe I am ahead of you by the way...like Mary said.  I had the nurse here, but she never got it in.  (She also opened the IV bag, before she started, so that was almost a big issue as well.  The pharmacist got involved, and decided it was OK, to leave it in the frig for 24 hours).  It is now in a brown lunch bag in the frig, I didn't want all the tubes to get messed up or the kids to knock it off.  However, I just realized I hope none of them take it for lunch today!

By the way, I asked the nurse that called last night, that I was told I could drink the IV instead.  She said she did have a lady have to do that, and "just" added red koolaid to it.  I am not joking here. The doc said it "just" wont be as good as getting it in the vein, but it will work.

By the way, I am NEVER drinking Solu-Medrol or any other thing that comes out of an IV bag. In case you are wondering. Boy oh boy...

One more thing I might add, they have in the home health care system that I am a Jehovah witness.  Nurse mentioned something about a blood transfusion, and letting me know she is aware of all my religious backround, as her cousin is a Jehovah witness as well.  I was so confused.  I told her I am not a Jehovah witness, she laughed and though I was joking. again WTF!  

Apparently someone at Home Health Care last time, asked about my religion.  I told them Jewish, and was told yesterday, "Oh, Jewish and Jehovah witness are next to each other alphabetically in the computer. Someone must have hit the wrong button."  OY is all I can say.

I told her to take that off immediately.  I can only imagine if , G-d forbid, I was in a car accident, in the ER and they let me bleed out because the think I am a Jehovah witness.

Again, I am really not feeling to happy about the medical care with Home Health.  (or any other facility. Really go to watch out for yourself, and make sure all your info is correct.

Ok, enough about that.

I am having the double vision, so for that, I do want the SM. But, if this continues, I think I would rather patch and eye and let it resolve on its own.

Michelle

[twopack]

Oh, who's copying who here?  How about a race to see who can break out of the mold first!

Actually Ren, I think Michelle HAS gotten her meds.  They just need to make that tiny leap from the 'frig to her vein.

I'm thinking of you both and hoping Thursday is the turn-around day from one end of the country to the other.

Michelle, tell that nurse to shut it or you'll make sure she gets a dose of her own medicine -  via the PR route!

Mary

[rendean]

Hi Michelle,

I am so tired of you copying me, honestly, lol. My steroids were ordered last Thursday. Have seen a home health nurse? Have I heard from a home health nurse? Have I been able to reach my doctor? Those answers would be no, no  and no.

Every doc office I call I hear "Due to the treacherous weather and driving conditions the office is closed." Well, why didn't they close down the restaurant my son works at? Why are the grocery stores all open? C'mon guys , buck up and get the job done.

See Michelle, you had to have snow, so we had to have ice. You had to have steroids, so my doc said the same thing. You haven't gotten your meds and neither have I. Copy cat!

Seriously, sorry about the 7 sticks, ouch!  As for "drinking" the steroids, it's a good thing that woman is an admitting "nurse" because she sounds dangerous to me. Taking pills, yes because I've done it, but drinking it?????????????

I hope things go smoothly tomorrow and that the steroids do the trick!

Ren

[Sarahsmom46]

Some people are lucky and just breeze through the whole home infusion process but that's the exception not the rule in my opinion.  After the trauma of what I went through with the first and last time I did it, I will never consider it again especially if your condition needs to be treated right now.  

You do learn from each experience how to try to head off issues such as the orders not getting done on time, making sure you ask for a nurse who has excellent insertion skills as you are a hard stick (even if you aren't) and any other potential issue that could come up.  You can make this home thing work down the road, but again, personally I am not able to do the home infusions but give you and others that are doing it a lot of kudos for trying to handle MS issues at the least invasive level as possible.  

Hope this will all be worked out tomorrow.  

Julie

[Lulu54]

Michelle you know this shouldnt be this difficult.  I'm glad you came to a decision.  It stinks that everyone else can't get it together to support you with this.  Here's hoping the snow stops  too.  

hugs L

[figuerpa]

Wow when I got my home health it wasn't that difficult. She did stick me three times but we got it in and no more problems. My neuro called them and that night I got a call from them and the day day they were here.

I really hope your experience gets better with the next nurse. You do have a lot of patients.

Good Luck and keep us informed.

Paula

[HVAC]

If you are a coffee drinker don't drink any until after they get a vein. Home health always sounds like a nightmare. I am thankful I have never had to deal with them.

Stay strong.

Alex