My Little Monkey and Her Pain
Having children is such a blessing. However, that blessing can be so hard at times.
When your children are adults, you no longer have the right to go to their medical appointments and be there for them. And now, because we are in Code Red under COVID-19, they have to be even more strict.
Now, don’t get me wrong, I totally get it. I commend the medical workers for what they are dealing with. They are overworked, underpaid, verbally abused, and so under-appreciated. These are people, not miracle workers! Stop being such assholes to them! But this story isn’t about that. This is about my daughter.
I haven’t really talked about this much because it isn’t my story to tell. But, with Sasha’s blessing, here I go.
Sasha has been diagnosed with Complex Regional Pain Syndrome (CRPS), better known as Reflex Sympathetic Dystrophy Syndrome (RSD). This condition is basically the worst pain you could ever be in. Based on the McGill Pain Scale, it is at the top. Above chronic migraines (29), above Ankylosing Spondylitis (32), childbirth (32-36) amputation of a digit (39), Kidney Stones (42), and Trigeminal Neuralgia (44). CRPS is rated at 46/50 on the McGill Pain Scale.
Now, I personally have not experienced CRPS, but I do suffer from chronic migraines, I’ve had 2 children (1 cesarian, 1 naturally), and I have Trigeminal Neuralgia. Of these experiences, I would take giving birth to both of my children at the same time and my chronic migraines over ever having a TN flare up again. It was by far the worst pain that I’ve ever been in, and chances are, it will happen again. If CRPS is worse than that, I wouldn’t wish it upon my worst enemy, nevermind one of my own children.
CRPS (from what I’ve read) basically begins after an injury or surgery. The wound heals, but then all of a sudden, you begin to feel pain, extreme pain. And it is so tough to diagnose because, on tests, nothing appears to be wrong. It is the nerves in your brain telling you that something is incredibly wrong, and you are in immense danger. Really, there is no physical evidence of an injury. Most people get brushed off and are lead to believe it is all in their head, and some of them are thought to be “fishing for drugs.” For many people, it takes years for a diagnosis. I can’t even begin to imagine how those people live with that pain. The pain from TN & CRPS is so extreme, they have both been given the nickname “the suicide disease” because the pain is so bad, at times you wish you’d just die and get it over with. Even worse, many commit suicide because the pain is just that bad and relief from the pain is very hard to come by.
My Sassy has been known to have a flair for being dramatic. She likes to be a part of the group and wants to be heard. So consequently, we didn’t always believe when she complained about pain. A few too many times, this bit us in the ass. Now, if she says she is having a problem, she is really having a problem.
A few years ago, Sasha had a ganglion removed from her wrist. For those who don’t know, a ganglion is a cyst filled with fluid that grows (in Sasha’s case) on the wrist. The growth was causing some issues and pain for her, so the Doctor had it removed. Her wrist got better, and she moved on.
About a year ago, the ganglion grew back. Sasha ignored it at first, but then it grew some more and began to cause some pain. She dealt with the pain for a while and continued to work and go to school. One of her first significant pain flare-ups was at work, and she sustained some small (or so we thought) injuries from the incident. She began to feel some pain in her neck, along with the pain in her arm. It was then that Sasha went to see a Doctor.
She’s gone for blood work, x-rays, MRIs, and CT scans. All were showing nothing. She has seen multiple doctors in Emergency and at the Clinic. She has seen Chiropractors and sports injury Doctors. Some suggested that it was tendonitis. Some said it wasn’t. It was finally one of her Physical Therapists that suggested that she ask her Doctor about CRPS. She looked it up, and sure enough, most of her symptoms matched those of CRPS, including the strange markings on her arm and hand.
Because this has, for the most part, taken place during COVID-19, she has had many appointments over the phone, which means the doctors haven’t always seen for themselves what is going on. Many didn’t have the time of day to talk to her. Fortunately, her Physical Therapists and our Family Doctor have been good, and in September, they began treatment for CRPS.
The first medication was intense, and Sasha appeared to have had an allergic reaction to it. She became very lethargic. She couldn’t string together a sentence, it took her forever to do anything, she began to have tremors, and then, she had a seizure. Back to Emergency we went.
The Doctor and nurses were fantastic! Within a short time, she had had blood work, an EKG, and another CT scan, just to be sure there hadn’t been any damage from the seizure. It was concluded that she was reacting to the medication and advised to immediately come off of it. They gave her a shot of some medication, and she was advised to contact our Family Doctor for the next treatment.
Her new medication seemed to be helping in small proportions. The pain surges weren’t as intense and didn’t last as long, but she still had them. She has been referred to a pain clinic. (we are still waiting to see if her paperwork went through) All seemed to be going well until Friday evening.
Sasha went to let Reign, our four-month-old Siberian Husky, outside. She is a decent size, very playful, and has not yet learned “mouthing control” which means she still uses her teeth a little harder than she should. As Sass was putting her on her leash, Reign was mouthing at Sasha and grabbed her bad arm, this caused an immediate surge of pain, and when she went to move, Reign was still attached. Now, this particular event would’ve been slightly painful for an average person; however, because of her CRPS, this caused a massive flare-up. Her pain was immediately at a 10 and was not coming down, so we rushed her to the hospital.
Again, the doctors and nurses were fantastic! They took her in from Triage right to a room. Now, because she is 22, they wouldn’t usually let me into Triage, but she was in so much pain, she asked if I could talk for her. They allowed me to stay with her to keep her calm.
It is extremely tough to watch one of your babies, no matter how old, go through pain. When your child is crying and begging you to cut off their arm, it is so heartbreaking. But, I was strong and calm for her. I was her voice of reason.
Here is the thing with CRPS, even if she were to get her arm amputated, the pain would still be there. Because it is a nerve condition, it will continue to be painful in those nerves.
The doctors tried a few things to see if they could get her pain under control, but it didn’t seem to be working. This was during a shift change, so we got a new doctor, and when he arrived, he told me that because we are in code Red, I had to leave. He wasn’t by any means an ass about it, but he was cold and indifferent. He didn’t say to go and wait in the waiting room, and they’d come out and update me; he just said I had to leave and began talking to her.
I do not fault that Doctor for asking me to leave; he was doing his job. And right now, their job is extra scary. But because some people are not taking this virus seriously, patients in the hospital and care homes have to be alone. Their loved ones can’t come to help care for them and be there for them. Sadly some of these people are dying alone. And because of cutbacks, there isn’t nearly enough staff to deal with all that is on their plates. They are being overworked, overstressed, underpaid and under-appreciated.
I did as I was asked, and I left. I can’t tell you how hard it is to have to leave your child, knowing that they are in pain, crying for their arm to be cut off. I broke down and cried. Even right now, as I’m writing this, I want to cry about having to leave my baby. Seeing her there, scared and hurting, I just wanted to pick her up in my lap and hold her. Hug and smother her in kisses like I did when she was little, and tell her it would be okay. I wanted to ask God if he could take her pain and give it to me, so she didn’t have to feel it, so she didn’t have to be scared, in pain and alone.
Sasha’s boyfriend, Ande, is super wonderful. I’m so happy that they have found each other. Ande sat in his truck in the parking lot the entire time. He was not leaving until she was going home with him. I know, if they would’ve let him, he’d have been there right beside her. He takes such good care of her. I went and sat in the truck with Ande. Sasha video chatted with us, so she didn’t feel so alone.
When they were convinced the other medication wasn’t working, the Doctor basically gave her a local anesthetic to numb the pain so she could sleep. Back home, she went.
But, Saturday afternoon, the pain started to get bad again. Soon it was at an 8 and not long after, a 10. And she was back in the Emergency Room. She called me crying in pain and asked if I could come and talk to the Doctor. She was worried that they didn’t believe her and were going to discharge her. So, back I went.
People, I can’t express this enough, being rude and demanding will get you nowhere. Going up and verbally abusing the staff is just going to upset them. This will cause a chain reaction down the line until it eventually reflects on your loved ones or back on to you! There is no need to be like that. These people are just doing their jobs!
I went to the intake clerk in Emergency, I explained who I was and asked if I could please talk to a doctor or nurse dealing with Sasha. I let her know that Sasha called me and asked if I would. I was friendly and polite. I mean, seriously, it is not her fault that there is a pandemic going on. It is not her fault that I can’t see my daughter. So why would I take my feelings out on her? She called the back and submitted my request. The Doctor came out and talked with me. He made a plan, they medicated her, and she was able to go home again.
Sunday morning, the meds wore off, and the pain came back. She waited as long as she could. Probably too long. In the evening, she was back at Emergency, crying and in pain.
Again, the staff were terrific. They took Sasha in and asked her what worked and what didn’t. She told them they treated her, and she was able to go home to rest.
Now, this may sound like it was nothing to you, but her “normal” pain level right now on a scale of 1-10 is pretty much between a 6-8. Imagine being always between a 6-8. That is not fun, and that is not a good “normal.”
Sasha would love nothing more than her pain to be gone to go back to Paramedic School and work at the Fire Department & Hospital. But we have no clue when she will be back on track, if ever. CRPS is a horrible, painful condition that she will have to live with for the rest of her life. There is a chance that it will go into remission, but it is very likely to come back. There is no telling when, how often or for how long.
The next time you scoff at someone who doesn’t “appear” to be sick, just remember, looks can be deceiving.
Comments
Thanks for sharing.❤
Thank you for being such a wonderful mom & grandma <3
Thanks for sharing Sasha’s story and yours as her mom. I appreciate being able to read it and know better her journey, makes me tear up thinking about her in so much pain. . I feel for her, my nerve and muscle pain levels were very high for a long time, couldn’t even stand to have clothes on cause it felt like I was literally on fire. When I was in the hospital all those years ago I prayed God would allow me to die the first 4 days I was there the pain was so bad and unending. All I could do was lay there and pray. God hears us in our joyful times and in our times of suffering. He saw me, and He helped me thru that time and every day since, the good, the bad and the really ugly days. He sees Sasha too and you and Eric as her parents and hears her cries. He’s not unloving and He doesn’t want this for her. We live in a very broken world but He can use even this aweful time and make good come of it. I hope to encourage you Kora-Lee and Sasha too , it will get better, she will come thru this stronger than before and quite possibly help someone else in the process knowing you both! Drs don’t know everything but the good ones are willing to listen and try or at least refer you to others with more wisdom. Don’t give up, push the drs to do more. It’s been years for me, 11 since the first hospital stay and surgeries, some drs believed me but didn’t know what to do but tried at least, other drs like mine here (no longer my Dr) either thought it was all in my head ( which is sort of true – brain/nerve ) or really didn’t care or just tried throwing drugs at me that didn’t help. We need to learn to be good advocates for ourselves and be polite but firm and not give up. You are a great Mama Kora-Lee and I feel your pain as a mom with sick kids – like Stephanie with her epilepsy, Matt with his hospital stays because of asthma and Jamie with his learning disorders and anxiety so many years because of it. We go thru so much with our kids but so much we can’t go thru for them. This is Sasha’s journey and although you can be there to support her she has to go thru it. Praying for wisdom for the drs, for complete healing for her, for the strength to endure thru, for peace for you all, for – and this may seem strange but I pray for laughter and joy thru the trials and blessings along the way. And most importantly I pray you and Sasha (family) will grow closer to God thru this and that you will feel the love Jesus has for you. Remember the story of the feet in the sand? He will carry Sasha thru this time.
Hugs my girl, I love you
Jesus loves you way way more xoxo
Thank you so much Susie. Sass and I actually had a very similar conversation when she was there. I told her how I got through the bad stuff and let her know that God wouldn’t give us more than we can handle. If life was perfect, we wouldn’t have anything to learn from. I prayed that I could take her pain for her, but I know it is going to prepare her for something more in her life.
I will always be there to help her have a voice when she can’t talk for herself and I pray that she is watching and learning for times that I can’t be there.
Sometimes in life, just having the faith that there is something more and bigger out there for you is what gets you through the day.
Thank you for all the love and prayers Susie <3 You are always in our hearts.