Well 2017 is here and the year is starting off with a bang. Just not the bang I had hoped for.
During my 3rd ketamine infusion October 11-16 I really thought that I was hitting a turning point with my health. I had 3 days of no pain during the infusion which was monumental for me given that I have not been completely pain-free since September 2011 when everything began. I really thought that since it was such a successful infusion that more good things were headed my way and maybe by January I would only need the wheelchair for longer distances and could walk normally with my walker the rest of the time.
All I wanted for 2017 was to try and begin to live a more normal life.
Instead things slowly unraveled…
I ended up BACK in the hospital October17 with intense stomach pains (literally a DAY after being discharged from the ketamine infusion). While my symptoms pointed to an intense gastritis attack, my ketamine drs still wanted an endoscopy to make sure the ketamine had not caused an ulcer (thankfully no ulcers were found) . Unfortunately the IV they tried to place in my wrist for the endoscopy November 3rd set off a devastating spread to my left arm and hand. A month later I would have another spread to my right bicep after a PICC line was placed there for an emergency ketamine infusion.
It’s been startling. It’s been scary. It’s been my worst nightmare coming to life.
It’s also been an alarm that has slowly become louder and louder. For whatever reason my body is shouting that something else is wrong something else is wrong something else is wrong…
so I need to listen even if I am not sure where the problem lies.
Trying to listen to my body means we are at a real turning point with my treatment plan. After the first upper body spread my main dr began to suspect that something was still causing systemic inflammation and that the tick borne bacterias I struggled with for several years may be back. My mold tests were also the worst my dr has ever seen meaning that I have a serious biotoxin problem.
What this all means is that it just doesn’t make sense to keep putting out the CRPS fires when the source is never extinguished. The emergency ketamine infusion in early December was NOT helpful at all, especially compared to the third. I had some relief in the hospital but it didn’t reverse the spread to my left arm and hand like we had hoped nor did it give me any relief post-infusion which is usually how the infusions work for me. I am unsure that anymore infusions will be beneficial until we figure out whats wrong and try to begin to fix it.
So last week I went up to see Dr Kaplan to discuss what we are going to be doing in this new year and while it was a VERY sad, hard, and intense appointment…I left with a plan.
1-I will be stopping all future ketamine infusions and will not be going forward with the planned nerve blocks in my neck that I was supposed to start next week.
2-I am being re-tested for Lyme Disease and Bartonella, another tick borne bacteria. I was sick with both of these for several years so its a real possibility one or both is back and active. He also wanted to test the antibodies in my Central Nervous System, we can use this to track if things are getting better or worse. Getting the bloodwork done has been a huge f&*^ing in the ass because any needle stick as of late has caused another spread. So first I went to my family dr who kindly offered to help out since my main dr is over 2 hours away. I decided that, despite the immense pain of someone poking needles into a limb with intense nerve pain, it would be best to let them draw from my left arm and hand since I already have CRPS everywhere. My right hand is my dominant hand and I am trying to do whatever I can to not have CRPS spread there.
Sadly this plan ended up not working. It did not matter where they stuck me or who tried…two nurses could not get ANY blood except from one spot but my blood was so slow the nurse was worried it was already clotting. SO I then had to do the entire thing AGAIN the next week at Dr. Kaplans! Two more nurses tried and even Dr Kaplan gave it a go (I love that man but he is NOT gentle haha) It became apparent that my left arm is just not a viable source right now, Dr. Kaplan says it’s due to the CRPS already affecting the vascular system in that limb. I ended up having to let them draw from my right arm since these tests are very important and need to be done ASAP. So far I am not feeling any signs of another spread (cross your fingers).
3- I am going to start targeting the mold. The results of the Lyme and Bartonella tests will take some time so for now I will begin to work on the biotoxin illness aspect. I have tried to treat the mold before when my first LLMD tested me for multiple types of mold but I cannot tolerate the medication they usually use to treat mold and have never been able to get up to the therapeutic dose needed especially given how extreme my biotoxin results were. Dr. Kaplan is using this and this, so far my stomach isn’t affected by either which is fantastic and hopeful.
4-If my Lyme and/or Bartonella tests are positive, I will be getting back on heavy duty antibiotics. Dr. Kaplan mentioned 3 antibiotics he would probably use, 2 Ive used before and 1 I haven’t. If one or both tick borne bacterias are shown to be active we will be switching between treating the mold and treating the bacteria.Trying to treat both is maddening due to the fact that the medications and supplements used to treat mold can pull medications out unless you space them out an hour before or 2-4 hours after. Your whole life revolves around spacing meds out which isn’t something I want or think is helpful when you are trying to have an identity outside your health.
I will be honest that I am DREADING getting back on antibiotics and SUPER DUPER dreading the herxheimer reactions that will follow but I really don’t have a choice. Thankfully I know now what treating Lyme/Bartonella is like so I am prepared and have some tools to help support my body. I don’t have to be scared like the first time nor should I assume it will be EXACTLY the same as before.
Soooooo that’s the plan for now!
The hardest part of the whole appointment is that Dr. Kaplan was VERY frank with me and told me given how severe my situation is that its going to take several years before he can get me well. I cant lie, hearing that felt like a punch to the gut. These 5 years have felt like a decade and sometimes even a century. Some days I cant imagine being in my body with this much pain for even one more day let alone another 365. On really bad days its hard to even conceptualize that theres a possibility I could be feeling this awful for the rest of my life.
That being said, I appreciate his honesty and at least I know what is ahead. I haven’t had that for a long time and sometimes the unknown is one of the hardest parts of being sick.
I will end this post by being completely transparent and admit that I am REALLY struggling right now.
I’m scared the CRPS will go full body, I’m scared I will never get better, I’m scared that being sick will continue to take things from me sine it’s already taken so much, I’m scared I will never get to be a mom like I always dreamed of.
The two spreads have brought on a depression that is deep and weighs heavy on my heart morning to night and back again. I feel alone and afraid. I feel unsure that I can keep going when my health has been a slow downward trajectory for 5 years with the last 2 being absolutely nightmarish.
That being said, instead of fighting it or trying to pretend I’m ok I am just sitting in that fear and isolation. I am sitting in it, meditating on it, and just submerging myself in hopes that in time I can swim up for air. I know there are lessons in this deep suffering and since I cannot make myself get better, I guess I’m trying to find how I can be a better human during this incredible scary and challenging time.
These winter days feel dark and long but I know that spring will be here soon. The crocuses are popping their heads out of the mulch in the backyard.
I will wait for my sunshine and try to hold out hope that it is on its way.