Starting stories RABlog week 2016
This week many of us in the RA community will be blogging about the same prompt each day for five days. Today’s prompt is starting stories. The full prompt is:
Starting stories – tell us about your diagnosis, what were you thinking, feeling or when did you first know something was wrong? Or maybe you were having a break from a biologic medication, and you decided to give it another try?
My starting story is also an ending story, so it is best to start at the end.
Ending
Things just were not right. So I did, what I do when I wake up in the night, I played solitaire on the computer. During the second game (yes I was crushing the computer) my right arm started to hurt so much that I could barely move it. So I did what I believe most American males would do, I moved the mouse pad and mouse from the right to left side of my computer.
Now let’s stop here, I had never before or since placed the mouse pad on the left side. But it seemed like a good idea at 3:30 AM and besides I was crushing solitaire. Then my left arm started hurting just like the right. So I decided to go back to bed. After all, surely everything would be alright in the morning.
I stood up and walked about four small steps before falling to the floor. I lay there shaking a few seconds when I noticed my legs had started to hurt. Ah, my blood sugar must be low. So I got up and did the finger stick, no I was 158, no low blood sugar. So I crawled /walked to the next room and into bed.
I was shivering so hard I woke Sheryl and told her I was feeling bad. Well, Rick, I don’t know what the problem is, do you want to go to the hospital Sheryl asked? No, get me a blanket, please. Sheryl said Rick, let’s go to the hospital, well I don’t know I said. I have stuff to do and besides the mouse pad is on the wrong side of the keyboard. Wrong side, Sheryl asked? Why is it on the wrong side of the keyboard? I moved it I said. Why? I can barely move my right arm. But now I can barely move my left arm. Rick are you ok Sheryl asked, you are not making a lot of sense?
After a few minutes, I said I think I better go to the hospital, I can drive myself. No, you are not driving Sheryl said. Well, I do not want to disturb you, I said. Sheryl said I am awake now if you need to go then for goodness sakes let’s go. But mostly let’s stop talking about going and go; Sheryl said.
The hospital
Who are you, asked the first lab coat I saw? I am ill I said, I need help there is no one out front. Sir, you cannot be back here, you have to go through triage before you are brought back here. I am ill I said, and I feel awful. Well go back and someone will be out shortly, no I am staying here until someone sees me. The lab coat said sir, will I need to call security? Then I felt this little tug on my sleeve as Sheryl said, Rick lets go back out.
No, you don’t understand I said as I raised my voice, I need help now. Well what’s the problem, I am shaking, and I can barely move my arms. Sir, you must go through triage to come in here, said the lab coat. I did triage I said, I self-triaged. Then a second lab coat appeared and said I will check him in. Finally, I said.
Losing control
After trading cards and giving a record of prescriptions I was finally taken to a room and that was when things got worse. I was shaking so hard they took my temperature, and it was above 100 (I do not recall how much) but the ER doctors immediately jumped to the conclusion I had the flu.
After what seemed hours but was 30 minutes or so I got them to call my rheumatologist who along with the ER doctor decided to do a dual treatment of IV steroids and antibiotics. The antibiotics to control secondary infection caused by the flu and the steroids to combat the second possibility that I was having a reaction to the TNF inhibiters and methotrexate I had been taking for 14 years.
It took about two days but finally the rheumatologist took full control of the case. He kept the antibiotics going as part of standard hospital protocol. He explained the issue I was experiencing was the onset of “Lupus like reaction” to the TNF inhibitors. Something I had never heard of and that is poorly understood.
Starting
The result was that I had to stop using TNF inhibitors. Studies now suggest that certain people can once again use these medications following a “Lupus like reaction,” but my doctor chose to withdraw me from further use because he feared a repeat of the situation.
The result is I went off of biologics for three months and finally chose to use Rituxan, a medication I was not willing to take before this happened. During those three months, my quality of life plummeted. Starting Rituxan was a God send for me. At the time, it was the only biologic medication I had not tried, and that was not the more common TNF Inhibitors, so it was that or nothing at all. It is a terrible way to come to the conclusion to use a medication. But it did give me the opportunity to once again understand just how much I rely on these medications for my quality of life.
I learned one very simple thing from all of this: maybe I should never change the side I use for my mouse pad.
-30-
rick
Take away for September 26, 2016
- TNF inhibitor medications can go wrong
- Rituxan has been a good medication for me
- Think twice before you change your mouse pad
I love how our bodies tell us when something is wrong and we know not to back down. Good for you.
Thank you Cathy,, I know that particular night I was in a world of hurt. Thank goodness the Rheumy knew what to do.
Wow, Rick, thank you for sharing the powerful story. (But maybe leave that mousepad where it belongs, hahaha!!)
Karen that mouse pad has not moved since. I think if it does move, RA may the least of my concerns. As I recall Sheryl had some misgivings about how difficult it was to move on the keyboard tray LOL
Wow, what a story! I love all the detail. It’s easy to imagine being there! I hope you’re now enjoying your mouse pad on the right side again. 🙂
Linda I doubt that mouse pad will ever move again. It requires a manual release and manipulation to get it changed and some strength. That week I was in the hospital Sheryl remarked about my decision to move it. I think moving it might be hazardous to my general well being.
I feel like we have to try, even if the results are not what we hoped for. It’s a way of saying to ourselves we did what we could and we still care about our journey. I am also glad that others seem to have similar stories of struggles and therefore I feel like I am not the only one. I am glad you found a better med xxx
Trish, the new medication has been so good for me, but of course I am taking it at maximum dose now. I do have fear (as most of us do) for what is next? When I started Remicaide there were two choices. Every time I think I have run out of options I get a new one. Thank goodness we can keep going and pushing. After all what real choice do we have?
Rick,
It’s amazing how endings, whether good or bad, can signify beginnings, or to paraphrase you, “starts”.
Your story, complicated by diabetes, is a lesson in how our disease and medications can behave differently in each of us. One size truly does not fit all.
A friend, who is a neo-natal nurse, talks about how careful they are when administering medications to infants. Weight determines amounts. She believes the same should apply to adults. Different weights, metabolisms, reactions. Maybe one day, this will be the norm.
Thank you for your kind comment, Marianna.
I (and I think other people with diabetes) find that treating our RA is so difficult. It seems like such a balancing act. Weigh this try that. My mom who was a type 1 herself, called this the great human experiment.
The other thing is that most of us with diabetes believe that between the two RA is worse. So our choice is usually to forge ahead. I know I am glad I have.
Great story Rick. Its weird to think you had used the TNF inhibitor for 14 years without a reaction & then you get one. It would be really confusing to deal with, because if you’d used it for so long you might not click that that was it.
Glad they changed you over.
Thank you for the kind words Ashliegh. I believe sometimes I forget how powerful these medications are. They really can blow up on us if not properly managed. This one just got out of control as I progressed. I am so glad however it all worked out. I have never been in a better place in 16 years.
Hi Rick: I was too lazy to sign up for your (wonderful) RA Blog Week, but I just wanted to say thank you for once again putting this together and a special thank you to the bloggers that did participate. I have so enjoyed the many wonderful posts and perspectives.
Carla, thanks for the shout out. We had such great fun and just so you knwo if you wish to contribute, the posting page will be up all during the month of October. So if you take a notion and want to write a blog about one of the prompts, then please do so and give me a heads up so I can give you an authors badge and a comment. Because every good blog deserves a comment and I know yours will be terrific. Also please join us next year it will even more fun if you join in.