I started writing this while waiting to be booked into hospital. Yes, you read right. Hospital. So much for not going to hospital in the first month of the year! I’ve just had to go through some back and forth with medical staff/nurses/admin at the Doctors’ surgical area and rooms. So apparently the fusions are not straightforward and need to be done in hospital. I know that if nurse Kate was there she would have gotten me a bed and sorted everything out for me. She wasn’t there and this is what inspired me to write about the importance of good caregivers. So I trotted my own butt over to the hospital to get admitted because I could not deal with the incompetence I was facing.
Through the years I have learned to traverse the rocky road of caregivers and medical practioners. It’s hilarious when I’m booked into hospital and you have a nurse waving “hello my friend”. She’s one of the good ones. There are two hospitals I go to. I’m currently at the one that is really great so I’m happy about that….but my heart is heavy. Walking in here reminded me of that traumatic nine day stay. Not good memories. The good news is I don’t have to stay overnight! I’ve learned to celebrate small wins!
I’ve gotten to know the nurses at both hospitals because over the years I’ve been in hospital so many times you get to know them, their personalities. I know which ones are there for a pay check and who are there because its a vocation. They take joy in helping people. I’ve seen and personally experienced some really bad treatment. The worst part is you’re sick and you’re basically at their mercy. There is a flipside. I’ve witnessed nurse’s being treated like dirt. If you’re one of these people, check yourself. They are not your private handmaidens. For the nurses out there who actually care I appreciate you and I can guarantee other patients appreciate you too. I hope you can inspire other nurses.
I have four specialists that I see. Now when you have a chronic illness having a good medical team is so important. Your Lupus is not going away so it’s a life long commitment, basically like a marriage. I have an amazing medical team. They understand me. They understand my weird idiosyncrasies.
I did however have 1 specialist that I kicked off my team last year. I gave him many chances to redeem himself during that year but we just did not connect. He was overmedicating me. Every time I saw him he just upped my meds and added more meds. I became a zombie. After discussing the angst and anxiety I was having with my psychologist and rheumatologist, my rheumatologist decided it’s best to refer me to a pain management clinic. I was happy with this because I was paying money for someone to just keep writing out scripts! It was nuts! Always remember you are paying. It’s not free. You deserve the best medical care and if you are not happy with the service, switch. Just like you would do with a cellphone company etc. You do not have to stick to the specialist just because you were referred to them!
Thank God for the pain management clinic! They had an array of options for treating pain. Instead of just medicating me the Professor spoke about procedures and long term pain management. I was so upbeat afterwards because finally there was actual focus on my pain and how we were going to tackle it. An actual plan! The Professor was already in tune with the my pain levels!
My rheumatologist is a godsend. I could not have asked for a better primary caregiver. The fact that he understands me as a person helps him in treating me the right way. He knows I don’t like hospitals and will try to keep me out of hospital. I’ve shared parts of my journal with him because I trust him that much. He is the reason I am alive today. He said to me “Tracey all I see is you deteriorating and it’s very concerning. You cannot be working and fighting your diseases which are on a severe level and expect to live for much longer”. He basically put his foot down because before I would negotiate with him and say I would work from home etc. He called me out and said all the things I tried had not worked and I needed to go onto long term disability. Hubs and I have developed an amazing relationship with him. I can’t begin to imagine seeing another rheumatologist. Ever.
Family and friends make up part of your support group. I’ve learned over the years, especially last year that some people are all talk. They don’t really, genuinely care. Hubs set up a whatsapp group with my family to update them while I’m in hospital because they become frantic as they are in another city (Cape Town) My other family members, my people, THEY really care. I also have friends who care so much, who worry and will pester me to go to the doctor when they know I’m not well. They all get so freaked out, worried and anxious. I’m sorry! I love you for loving me so much! Sometimes they treat me like a fragile porcelain doll. It’s hilarious but warms my heart so much. That’s what you call love. Some of them are far away but still are so close to me and man they give me good advice.
Then you have people who ask for the sake of asking. They offer help or to be there for you but like I said. I have spidey senses about these people now. What do you actually do to help me? Do you get totally freaked and anxious when I’m sick? No. “Oh Tracey is just in hospital again. Whatever.” That’s okay. It’s okay to not bother yourself about me. It does speak volumes about you and our relationship. You don’t need to force a fake relationship. The #mefirst movement has allowed me to be okay with this. Positive, authentic vibes only please! It’s 2020 and I see you and hear your empty words. “Just remember I am here for you” The hell you are. Fakery at it’s finest. Rather just don’t even bother. Don’t pretend to care. It’s fine. I don’t care because I have amazing family and friends who genuinely care. People who’s lives would actually be impacted if I died. Who would actually cry and not fake ugly cry. It’s 2020 and I see you. Clearly. ( sorry for the rant. Had to get it out!)
Saved the best for last. My dear hubs. He does so much for me. Today when I was filling in hospital admission forms and all the drama was happening I just wished he was with me. He knows how to get this stuff done quickly. He understands my world and my struggles. He doesn’t expect to come home to an impeccably clean house and a massive meal. You see, he gets to see me at my worst. He knows about the depression and anxiety. The anger and all the emotions that come with it so he tries to make my life easier. I’m incredibly blessed to have found a man that through all this crap, loved me enough to stay and not run for the hills. He encourages me. He gives me talking to’s. He sees my tears, my anger and my frustration. He sees me at my worst but he also sees me working hard at getting better. We are a team.
I’d love to hear about your experiences with caregivers. I’ve heard some horrific stories about incompetent medical staff and caregivers. Horror stories about how people have been treated by their family. My husband will then remind me how blessed I am because not all families love like my family does.
So here I am. A little bit of a mess. I don’t know guys. I’m struggling a bit mentally right now but I know I will pull it together. Let’s just pray this infusion takes and the new meds work and by next week I’m back to going full throttle. Right now I don’t think I can but I know I will put one foot ahead of the other and keep it moving. I’m not going to let this need for treatment in hospital derail me. I will be in my feels for a few days. I allow myself to feel those emotions for a period of time and then I pack them away and keep them moving! As my granddad taught me… keep pressing on.
So to all the medical staff, support systems who GENUINELY CARE, THANK YOU! Without you the struggle will be so much harder. To my support circle thank you for the messages of love, for freaking out when I’m sick and rejoicing when I’m well. Who are consistently by my side, encouraging me everyday. For believing in me when I don’t believe in myself. To my real, legit people… I love you. To my husband, I wouldn’t be here if it wasn’t for you. Thank you for loving me on days where I’m in creased pajamas and my hair is an untamed mess. Thank you for looking after me when I’m ill. Thank you for holding my hand when I’m at my most vulnerable in a hospital bed and assuring me everything will be ok. Like kids have a favourite blanky that brings them comfort and they take everywhere…. you are my blanky.
I hope you all have good support systems. This is not a fight you can do on your own. Reach out if you need help. Reach out to me and perhaps I can help you or point you in the right direction. Join Facebook groups! While no two lupus cases are the same you are not alone!
ONE LOVE ✌