Health update

I share this in hopes to spread awareness and maybe help someone. It's funny what people perceive as "too much" to share on social media. It all has to be rainbows and sunshine otherwise you should "keep it to yourself" but that's not how we grow and learn right? We gotta take the good, the bad, and the ugly. Makes for a more well rounded person, plus it allows others to feel less alone when we share the "tough" stuff. I see people share their cancer journies, fertility struggles, kids with special needs stories, those with health issues and I'm always so inspired. It also teaches me to be more kind and empathetic when I read these insightful posts.

I figured I would share some of what has been going on with me and my my health. It may help someone…since Russell was born I’ve had some very weird and uncomfortable neurological symptoms. For example dizziness, headaches, blurry vision, extreme fatigue, neck stiffness, noise and sound sensitivity, weakness, and ear ringing. Some nights I can actually hear my pulse in the pillow. This has been constant since April. It’s actually been quite awful. I haven’t been able to fully enjoy my family nor have I been able to experience life due to the fact that these symptoms make it hard to do things. Some days I will push through and usually Pay for it the day after. Our lives have been turned upside down and I have been Gaslit by so many doctors telling me it’s postpartum depression. Odd because a simple Google search and you can see those physical symptoms have nothing to do with ppd. I mean I didn’t go to medical school but this I know. I have seen over 30 doctors, have tried over 20 different medications, have had 5 hospitalizations, been to the ER 7 times, have had countless tests and labs done. Not how you want to spend the time with your new baby. It has been quite traumatizing to be honest and I won’t get this time back. Finally I found a doctor who suspected a csf leak. What that is is after a spinal or epidural the dura is punctured and will leak spinal fluid making you quite uncomfortable. The only way to fix it is by a blood patch where they go in with an epidural and blindly patch that area. I had to beg and plead literally beg my obgyn to get me one to see if it helped: these are done diagnostically to and if symptoms subside you know you have one. I had one recently and felt reprieve for a whole three days. It was glorious. I could actually see! Shortly there after symptoms returned. I begged for another patch, sometimes takes more than one, but my doctor said no. Said it’s uncommon to need more than one, according to Mayo Clinic and Duke, most people with csf leaks need and average of 2.6 Patches to be sealed and if that doesn’t work some need surgery. For the last few days I have been frantically trying to find someone to help me with a second patch. Most doctors brushed me off and others said they couldn’t help me until the end of November. I finally found a Neuro radiologist who is well versed on leaks and is willing to help. Of course it’s out of pocket bc of lovely insurance which is tough bc I’m not working right now. I am so desperate to feel well so I’ll do whatever. This procedure is scheduled for 10–26. I’m hopeful and cautiously optimistic that this will be it for me and I can finally start living my life Again and not just put on a fake happy face. That has been exhausting too. If this in fact the solution I would like to go back to all those doctors and say thank you for not listening to me while I was suffering and brush me off as depressed. Depressed bc I don’t feel well. Our healthcare system is very broken and too many people suffer for wayyy too long bc doctors are so quick to brush you off and not dig for answers. Maybe that will change someday. For those who are hurting…please advocate for yourself and never give up. I’ve been pushing through, not well, for 6 months straight and I’m just tired. Ready to feel better and hoping this is it. Keep up the good fight and trust your gut. You know your own body more than your family, friends, or even the medical professionals. Always search for answers…it just might not be on your timeline. Anyway if you have any insight or questions please reach out. Invisible chronic illnesses need more recognition and understanding. Blessings to all. #chronicillness #csfleak #keepgoing #nojudgement #supprort