The battle rages on

It’s been a while. I had to go off the grid and really focus on my healing. I needed to put my all into it. I was kind of forced into being off the grid because after the surgery on my neck I physically could not use my phone or laptop for even a short period of time because inevitably I would be in pain. Let me break this down for you because it’s well, eventful?

I went in for the surgery on my neck. They were going to cut the right side of my neck to decompress the nerves in that area because my occipital pain is extreme. The right side is the worst so we went for that one first. It’s scary how used to hospitals and procedures I am. I guess all of us who are in the chronic illness community know their way around their hospital, the protocols etc pretty well already. When nurses know your name!

This go round the anaesthetist really smacked me. I liked that. I didn’t even start counting. Post-op was scarier this time round. Again my blood pressure tanked. I remember being out of it and confused. The anaesthetist came to the recovery area and gave me a shot of something to boost my BP. Some meds were put in an IV as well. I had to be monitored by a nurse for 2 hours, regularly checking my vitals.

It’s become very hard for me to type. I will be switching over to more podcasts and videos. I will be doing more podcasts and YouTube videos because it is easier and I can tell you everything! I know my blogs tend to be long. It’s just that there is so much to tell you! Also hubby bought me podcasting equipment so I’m also really excited to get stuck in now. A Lot more content!

The festive season saw me unwell most of the time. It was actually unpleasant to be so ill when we had flown all the way home to see our family for the festive season. This festive season brought about alot of new realisations for my husband and I. You know, about life and relationships. I’ll be talking about these festive season epiphanies in my podcast because I think they are important and could be useful to some.

I’m home and resuming treatment. Dr Raath is my new pain specialist and man is he amazing. I’m all in with him now. I needed to see how my first treatments went before I committed to him as my new pain specialist. Yes, he is in another city but it is so worth the trip. There is something so comforting about a Doctor that believes you. He believes you are in serious pain and he sets out with a logical approach to help you. He explains and demonstrates everything. He even welcome patients who google because he wants us to be empowered. He encouraged me to continue getting the word out because of the lack awareness and understanding in South Africa about Fibro, including the medical community. I saw my Rheumatologist for my check up as well. He said to me that my condition is pretty bad. In fact worse than I was before. He actually suggested taking a trip to the US to see what they can offer me because South Africa is far behind what is being done in certain other countries. Ummm.. wish I had that kind of money! I need a GoFundMe for that trip! For now I am going with Dr Raath. What really got me was his explanation of treating Fibromyalgia / CFS

Fibromyalgia is a fire that causes alot of smoke. Doctors get stuck on getting rid of the smoke (your pain) but neglect to put out the fire. The fire is the cause of the smoke (pain), so wouldn’t you logically want to get rid of the fire?

Dr Raath

I saw Dr Raath last week. We discussed the way forward. Do I still have back pain? Hell yeah! Holy hell I can’t do the smallest activity without being left in pain. The stiffness is a killer. I cannot bend. I cannot bend to fill the dishwasher or a low cupboard. I literally moan and groan. Dr Raath went in to decompress the nerves in my lower back. I no longer have nerve pain but it doesn’t mean my pain was magically going to disappear. There are layers of pain that have to be treated. This was just the first procedure in a long process of getting rid of pain. There is no magic wand. I understand this. It’s a marathon not a sprint.

We are now going to try radio frequency ablation to the whole lumbar area. If it works great! If it doesn’t we go to Plan B. I have started infusion therapy with Dr Raath. He has infusion areas in his rooms. Oh boy my first go round has been hectic. Check out my podcast where I explain the different meds and how they are meant to help. It could be really useful information for some of you.

The infusions last for 4 hours. I had vitamins, morphine (to break my pain because he believes me!), Platelet Rich Plasma (using your own blood to create an IV) and Butyrate. Butyrate looks like a wonder drug. The Kardashians do the PRP. I’m not a fan but I saw them go for the “vampire facial”‘. Instead of smearing it all over my face for nice skin this is put back into my body to help with healing and killing the fire.

They were amazing. So attentive and helpful. The nurse clearly explained the side effects to me so that I had no surprises. She also didn’t minimise – she is a straight shooter. I have been feeling a bit rough. I checked in with their offices via email and they came back and assured me that what I was experiencing was normal. What fresh hell am I putting myself through this time? I have to have 15 of these IV infusions. 4 hours every week for 15 weeks. Exciting times. That reminds me. I need to download stuff to watch!

This has been a hard week. A dear, dear friend passed away suddenly. Went in for a biopsy on a lump and something went wrong. It’s surreal yet completely heartbreaking at the same time. So many of us are just in shock. What an amazing soul we have lost. She truly was a ray of sunshine. Heaven has just become alot more fun but we have truly suffered a great loss. Of course I have developed a pain flare. The emotional stuff does affect me as it does others. This shock to my system has sent me into a downward spiral of pain. I’m glad that I am going in for my infusions tomorrow because I know they will be able to break the pain flare.

I am so keen to start the Ketamine infusions. I wish they could give it to me tomorrow because it’s supposed to work on chronic pain, depression, mood disorders (more on this in my podcast). Unfortunately they will be admitting me to hospital to start the infusions because it has to be monitored. So I will be going back in to hospital for the procedure on my back and I will stay for 5 days receiving ketamine and other infusions. I should find out more when I go for my infusions tomorrow.

This feels good. To be able to write again. I have however had to start getting creative. I have to use voice to text and then put it in the blog format. It feels good to release things again. I can’t wait to do my first podcast so I can expand on things I’ve spoken about here. I look forward to interacting with you all again!

Much love. Please remember to hold your loved ones close. Tell them you love them. Tomorrow is not promised. My friend and I were supposed to go for coffee. That’s gone now. In an instant. This has brought out so many emotions in me about our mortality. As painful as this is, it’s also a learning experience. I try and look for the lesson in everything that happens. I’ve found some lessons and I’d love to share those with you to. That will be a whole other episode on my podcast.

Stay safe. Take care. Chat soon!

One Love