I haven’t posted in awhile since I decided to take some much needed time to rebuild my personal life. I haven’t had much of one since first becoming ill 3 years ago and at that point my personal life had some hard knocks due spending the prior two years dealing with Endometriosis. I realized that I needed to get back in touch with the aspects of my life that aren’t connected to work and sickness.

Also, I was able to see my new Rheumatologist in early April, and he is fantastic! I got some answers, and those have been hard to swallow. I’ve not been in a place where I can help others with their chronic illness journeys as mine has become more complicated and harrowing than I could have imagined.

Apparently I most likely fall under a group of diseases known as autoinflammatory disease1, this family of illnesses is also known as periodic fever. In my case the periodic part is quite ironic since I haven’t had a full day at a normal temperature since mid September. My Rheumatologist has already expressed concern that unlike the other conditions in the auto inflammatory group mine does not appear to hit remission. He also agrees with my other physicians and that the steroids I had been taking to manage my migraines and Meniere’s disease were making the autoinflammatory disease.

Autoinflammatory diseases are very similar to the autoimmune diseases, and mine most resembles Lupus. Likely a decade ago I would have been diagnosed with serum negative Lupus, however, with the advances in Lupus antibody testing any informed Rheumatologist no longer believes in serum negative disease. Autoinflammatory diseases are also caused by a malfunction of the immune system, though that malfunction occurs in the innate part of the immune system whereas autoimmune diseases occur in the acquired immune system and thus revolve around antibodies. The innate immune system, also call the primitive immune system, evolved prior to our acquired immune system thus there are no antibodies involved in the disease process.

My Rheumatologist stated it to me plainly, “our understanding of auto inflammatory disease is where we were with Lupus in the 1950s”. He kindly didn’t mention the that fact back in those days Lupus was lethal. He stated my best bet was the National Institute of Health and their periodic fever clinic, and that my autoinflammatory presentation was particularly rare due to the previously stated fact that my fever is not periodic.

At my follow up appointment in May we rounded up every potential outlying lab that could potentially point to this being anything else. All of that labwork came up as negative, including some of the older tests for Lupus. At that point all my information was sent to the NIH clinic. Currently I am just waiting for my Rheumatologist’s office to fax me the NIH patient intake form so I can get an appointment.

Along with that I’ve learned some other harrowing things about my condition. I’ve apparently developed (thankfully) benign tumors in my kidney and liver. My pelvic/lower abdominal adhesions are once again returning and it is likely that I’ve past the threshold for another surgery. My connective tissue is somehow breaking down. I have severe osteoarthritis in my lumbar spine including a bone spur at L5/S1 which is contacting the root of my sciatic nerve. The L4/L5 disc is under strain. Thankfully right and left nerve blocks at L5/S1 gave me my legs back, and it has been absolutely amazing to be able to walk some of the time unhindered. Unfortunately the auto inflammatory disease impacts all my muscles and joints so without a crap ton of muscle relaxers and opiates I still can’t walk. Though my pain management clinic is absolutely fantastic and they get my condition and situation so my med regimen keeps me comfortable and able to move most of the time.

Back in early March I was finally on an appropriate regimen of medication for pain and joint/muscle stiffness. I had also recovered from what I had done to my body by trying to work. I finally reached a point where I would have a number of “good” days per week. Days I could go out and do things. By late April I was clearly starting to go downhill again. My good days were still pretty good, though my bad days were completely awful. Debilitating pain that ate through my medication, spiking higher fevers, malaise, fatigue, etc. I came out to Southern California in mid May to visit family and also to escape the weather back home. The one 80+ degree humid day we had back in Baltimore I felt like I was going to die. Since coming to California my fevers have been easier to control, though I’m starting to not really have “good” days anymore.

So I’m hitting my “come to Jesus” moment when I realize what I’m up against. A rare form of a rare disease that may or may not have even partially successful treatment options. I spent so long normalizing and denying my symptoms due to having a Rheumatologist not believe in me for almost a year. Undoing that denial while simultaneously dealing with a worse than imagined reality has been a process.

Since I don’t know what my future holds I am now living my life as I want to. It’s funny how what matters becomes so abundantly clear under circumstances like these. I see clearly now what I care about. This site/project is still one of those things, and I hope to be writing more in the near future. However, everything I do has to be done with a very careful and limited balance of energy and time. So the choices I make now carry a lot more weight than they once did. Know that when I choose to spend my time here that it means a lot.

Ordeal and Surrender

I’m involuntarily taking you on a journey, the same one I’ve been on. It will wind, it will seem pointless at times, though I believe it’s worth it. Ordeal reveals naked truth. It comes through pure vulnerability and surrender. It’s all a …

Grassroots All Stakeholders Healthcare Action Proposal

Please get the link to this page out there. We want all in for this all included project.
The Short Link for this page:

Drafting is occurring on Google Doc feedback welcomed!

Short Link:

Grassroots All Stakeholders Healthcare
By the Chronic Advocate aka …

Understanding Meniere’s & Going Bilateral

Meniere’s Awareness mug by Infinity Creations Company

I’ve been dreading and avoiding writing about this, since well it’s always been my Meniere’s worst nightmare. I’m pretty sure I’m not alone in that, I think most of us with unilateral …

Provider perspective on barriers to improved patient engagement

image source comics

I was thankfully able to catch the MEQAPI chat today, and I ran across the same problem that I typically do in these improving healthcare and patient involvement chats. Healthcare is a nasty and complicated …

How I switch into disability gear

I’ve been VERY busy. Since it became clear that I need to go back on disability I’ve been very busy switching gears. I hope some of what I do when I go on disability will be helpful for some of you out there going …

Rolling with resistance

Yesterday my world collapsed, and yet everything is where it needs to be. My work doesn’t think I am well enough to fulfill my job duties. I can’t disagree with them. My health is just continuing to deteriorate, and I’m not much closer to any sort of answer or treatment.

I …

Acclimation and Adapting

Earlier this month I realized that I had not really had much improvement in my symptoms after months of antibiotics, I had simply just acclimated to them. I think my fatigue has improved some, though when I looked at the full picture my condition had actually worsened. I had simply …

3am ramblings

My ear decided about an hour ago to start threatening another Meniere’s attack. Between the anxiety that creates and the discomfort sleep is awhile off. I’m trying to just get back into blogging and reconnect. It’s hard because bad news and a bad mood is not something I like to …

WTF is wrong with me

I haven’t been posting because I’ve been very ill. My Lyme treatment didn’t go according to plan. A week ago my doctor yanked me off my antibiotic because I was having a Lupus like reaction. Instead of my low grade fevers resolving with treatment they went up. The last few …