Saturday, September 14, 2013

One of the worst things we have to face having MS is those days when our balance is not quite right

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 We all know the days, when we wake up and the whole room starts spinning and we feel like we've had a little too much to drink but actually we just got out of bed. The fancy name for it or technical name for it is vertigo. I just call it a bad MS day!

The end of January 2013 I had one of those days. I had gotten up and barely could make it to the bathroom. I tripped and fell landing directly on my left shoulder. The pain was excruciating and I just knew that I had dislocated or worse broken my collarbone. When my husband got home from work that day I was in tears.

Now you all know people with MS suffer in silence most of the time so therefore when we do hurt and it's visible to the other person it's kind of scary! I think my husband was kind of freaked out. He wanted to take me immediately to the ER but of course I refused to go. I failed to
mention we’re also a little stubborn too. By the end of the next day, I was in so much pain I didn't argue with him or anyone else. I ended up going to urgent care and was very glad I did. They sent me to an Ortho specialist who did a series of X-rays, MRIs, etc. After all the testing was completed, we found out I had torn my rotator cuff. The only way to make it stop hurting was surgery. I was so excited! NOT!! The doctor did suggest a series of steroid shots that may or may not help, so I was willing to try those first.

For the next couple of months I got a shot every six weeks, a very painful shot might add, directly into the muscle where my shoulder was hurting. They seem to help for about three weeks at the time. But as soon as the medicine wore off the pain began again. By the end of May it had gotten so bad that I was unable to lift anything with my left arm. Getting dressed was already a problem with my MS so this just made it almost unbearable. I went ahead and scheduled surgery for the end of August. I have two little grandsons who love to swim in Meme's swimming pool. I wanted to be able to share this summer with them. I knew I wouldn't be able to go swimming with them or enjoy the rest of the summer if I had a sling on my arm or was in a cast. And truly I didn't know which one it would be I just know I wanted to spend the summer with my boys. They went back to school on August 5, and I scheduled my surgery for August 21. The Pre-op went great no problems and as far as I knew I should be in and out within a 24-hour period.

I forgot about Murphy's Law. I took an overnight bag just in case and it's a good thing I did. My husband took the day off just in case and it's a good thing he did. They explained to me how the surgery was going to go and it sounded very simple actually. And the best part about it was I wasn't going to feel a thing! I really like that part!! They were going to do a nerve block on my left side so I was to be numb for several hours after the surgery plus I would have a pain pump installed that delivered numbing medicine to the shoulder area for several days afterwards. Sounded full proof huh? MURPHY'S LAW!! I had to be at the hospital at 5:30 AM. I'm glad it was early though because I'm a coffee person and I was hoping when I woke up I could have a good cup of coffee. The joke was on me. They took me down pretty much immediately got me prepped and immediately pissed me off because they would not access my port.

Now I have a port for a very good reason. I HAVE NO FREAKING VEINS! I tried telling the nurse's this but of course I'm just the patient, I really don't know anything. So she stuck me three times trying to get the IV in. On the third try, I looked calmly at her and said "this is your last chance! If you don't get it this time, we're done." As luck would have it, she found a little bitty vein that hurt like hell and stung like a bee, and you would've thought she won the lottery by the look on her smug little face. She had the nerve to say "See there, I told you you had some veins". You have no idea how bad I wanted to slap her, but I knew the good stuff was coming pretty soon in that IV so I didn't say anything. The next thing I remember is kissing my husband goodbye, and then some cute little male nurse was holding my hand and I was asking him to sing me a lullaby. Apparently he did, because that was some good sleep. I woke up in recovery and the whole left side from my shoulder down to my knee was completely numb. They were asking me to wiggle my fingers and for the life of me I could not do it. I thought the surgery was over with but it this time all they had done was the block. I thought to myself this is going to be a breeze.

MURPHY'S LAW!! The next thing I remember was some guy in my face saying were going to have to keep you overnight. At this particular time I could've cared less, just don't let me hurt. It was pretty much downhill from this point on. I got to my room, started waking up a little bit, and told my husband I felt something wet on my shoulder. He said maybe I was just sweating or maybe it was just some water or something, but I kept telling him it was really, really wet. The day went on in the feeling started to come back in my fingers my shoulder was not nearly as numb as the doctor said it was going to be. That pump that was installed was supposed to keep me from feeling any sort of pain at all but by 4 PM I was miserable. Fortunately for me I had a very attentive nurse that day the only day. I kept telling her my shoulder was wet and when she came in to check it she discovered that the pump that they had installed in surgery to numb my shoulder had somehow come out. So I was getting absolutely no relief from any sort of pain medication other than the residual medication from anesthesia.

They call the doctor and he ordered something called Dilauted. I had never had this medicine before so I had no idea what it would do to me how it would make me feel or even if it would help my pain. I can get a shot every two hours and they were ordering me a pain pump that I could mash every six minutes to deliver medicine directly into my veins. It took the hospital almost 6 hours to get this pain pump set up. Have no idea why it took them so long! Of course it took him 45 minutes to get a shot of Zofran to me when they had that in stock on the floor. So around 11 PM that night they came in with the pain pump and I thought finally I would get some relief. I think I slept maybe three hours and woke up with one of the worst headaches I've ever had my entire life.

And that's when I met Katherine. Apparently shift changes around 7 AM at this hospital. I had to use the restroom and was connected to God knows how many tubes, so I needed help to get up. Kathryn, helped me up, took me to the bathroom, and told me she would be right back. 15 minutes later, I was still waiting for her to return. I called for her several times and then realized she had left the room completely. Not knowing whether or not I could make it back to the bed, I went for it thinking the worst thing that could happen would be I would just fall. When I got almost to the bed, the tech came in. She was a Godsend, and of course by this time I was very nauseated. I told her what had happened and that Kathryn had left me in the bathroom. She got me something for nausea, and sent Kathryn to the room for me to confront. It wasn't pretty. All through the day this nurse was horrible and I am a very patient person. When my husband got there, I told him to watch and see if maybe it was just me.

By 1 PM I was throwing up. This medicine that they had given me was not agreeing with my system at all. Kathryn literally walked out of the room as I was throwing up! I'm so thankful my husband was in the room with me otherwise no one would have helped me! After I got my wits about me a call the tech back, the one that had helped me earlier, and asked for the nursing supervisor. I reported Kathryn something I have never done in my 52 years. I was in a very vulnerable situation, in a lot of pain, not able to move around on my own, and this person being paid to take care of me was a piss poor example of what a nurse is supposed to do! I had a new nurse within 15 minutes. The next day was Friday and I was told at 10 AM I could go home. All the doctors had already signed off, released me, gave me my instructions, and told me what I needed to do, could and could not do, and when they expected to see me back.

By 2 PM I was still laying in that hospital bed! I was livid!! My husband is the most patient person I've ever seen. He kept saying they'll be here in a minute, just hang on, calm down, you know all the words you say to a crazy person. I was tired I was hungry I was in pain and I was ticked off! I literally started screaming in the room, which is totally not my nature! He saw a side of me he has never seen. I think I may have scared him a little bit. LOL. I mean seriously, 4 freakin hours to do paperwork? Somebody dropped the ball for real. Once I started screaming, people started coming in the room. We were on the way home by 3:30PM!!!

Am I going to file a complaint? YEP! Am I sorry I reported Kathryn? NOPE! Am I embarrassed I had to scream to get out of that place? HELL NO!! Probably the only thing I would do different, or one of the things I would do different, is I DEFINITELY would not turn away my lunch tray (ha ha).
The pain has been somewhat manageable, but I have had to sleep in the recliner for about a month now with my arm propped up on a pillow. I start physical therapy in the next couple of days, and I actually get to lose the sling on Wednesday of next week! I am looking forward to being able to snuggle with my husband again real soon!! I will keep you guys posted as to how I’m doing, and look forward to writing about my Physical Therapy experiences!

Cindi E. Hopper