Saturday, May 9, 2015

Adventure Is Out There - Health Update

While the first week of May started out pretty rough, it sure did get a whole lot better! Sunday began with a trip to Urgent Care for a horrible rash that had manifest itself all over my lower legs and ankles. It felt like tiny, spiky, scolding hot rocks were attempting to thrust themselves through my skin. The urgent care sent me straight to a Dermatologist Monday morning as they honestly had no idea what could cause these odd lumps that quite frankly, resembled nipples the size of quarters. The Dermatologist didn't have much luck identifying them either. We decided to biopsy a few of the nodules leaving my poor leg looking like Swiss Cheese with its holes stitched. Luckily biopsies are painless during the fact, however, the day after is a whole other story! Ouch. Unfortunately the lab that took my biopsy was unable to identify my spots and have found it necessary to send the specimen out to another lab. More waiting... Just my luck! ;)

Tuesday I was finally able to be seen by the Headache Clinic at the University. The Headache Clinic doctor I met with may have been the most in tune, incredible, and informative doctor I have ever had the pleasure of meeting! She listened intently to everything I had to say, let me explain exactly what I was feeling, and sat patiently while I expressed my frustration regarding the lack of understanding surrounding these headaches. She agreed that these headaches are in fact real, and are very likly due to a neurological issue. We talked about a few meds to assist in pain management, and other more holistic pain options to pursue as well. The most important topic however was what could possible be causing this undiagnosable head pain. She explained to me that there could be many reasons for my serve headaches: 
1. Lupus has effected my Central Nervous System causing possible swelling of the brain. 
2. Due to my serve brain trauma back in December with the leaky spinal tap and meningitis my brain is experiencing "muscle memory pain" which basically boils down to my nerves being unable to forget the pain and reminding me of it occasionally. I guess this is quite common with any body trauma. 
3. The blood patch I received to fix the leaky spinal tap in December may have worn off and I now have a chronic leak.
4. Some autoimmune patients just get chronic head pain, and thats that unfortunately. 
She scheduled a MRI of the brain to rule out a few of the possible explanations. She is highly suspecting option two, but wants the MRI in the slight chance we may be looking at option one or three. I had the scan done late Friday afternoon so I should receive results by Monday of next week. 

Wednesday was my much needed Rituxan Infusion! As many of you know this biologic agent obliterates my immature B-Cells in hopes to destroy my malfunctioning immune system. I receive this treatment every month, along with some much needed IV fluids and steroids. While at my infusion this round I ended up talking to a few other patients on the unit, one who actually had Scleroderma! She just so happened to be there getting her Rituxan, what a small world! It was nice to talk to someone instead of just sitting in my small little curtained room for 5 hours. Though I have such a vast age difference from most patients, it is still nice to meet others fighting a similar battle. The 'fall out' from this lower dose, but more frequent infusion is so much more bearable than the large dosing spread further apart that I used to do. I am still quite beat the day after, but its no where near the hell storm I faced before! All in all, this round went great and I look forward to my next round in June! The best part about Wednesday? I got to wear the awesome shirt I designed on! Everybody seemed to love it! And in case anyone missed it my first post was published on The Huffington Post Wednesday! Visit the original post here!

Friday my husband took my on a little adventure! I have been pretty much homebound due to my declining health over the last year which has been extremely hard on me. I used to be an adventurous and active young woman who enjoyed exploring the Pacific NorthWest greatly. Hiking, backpacking, and camping were some of my favorite hobby. While Noel is still able to enjoy this great state and bring me back incredible pictures, it's just not the same as experiencing the beauty for myself. I am happy to say that I was able to "hike" for the first time in probably two years thanks to my oxygen tank and some donated Solumbra SPF clothing! Noel located the perfect hike complete with a short hiking distance, and nicely paved trails! I am not 100% sure oxygen carts were made for off-roading, but oh well! ;)

Adventure is out there, even when you're broken! It was quite a wonderful sensation to once again breath fresh mountain air and take in Washington's unbelievable views! I have dearly missed that. While I am paying a high cost today for being so active yesterday, it is well worth each and every pain to truly live! 


  1. So glad you were able to get even a little "doing what you like to out-of-doors"! In spite of all the challenges, there is also much beauty in this life.
    Sending love and prayers as always!

  2. I've also suffered meningitis and then encphilitis from my immune system attacking my central nervous system. I've got neuro Behcet's. The doctors at the ER refused to believe that my meningitis was related to the fact that I had Behcet's. I was sent home 2 times from the ER even though they knew I had meningitis. Of course the spinal tap told em. Then it spread to my brain..... not good. Still deal with migraines, seizures, memory loss. I was wondering if you ever dealt with such blatant incompetence ???

  3. And I was so afraid of haVing to do the blood patch. Luckily I didn't need it. I'm sorry that you did...

  4. It looks like a lot of the evidence really points back to that leaky spinal tap. I hope that the test results that your doctor got a definite result as to what may be causing those chronic headaches. That said, I'm glad that you got through your Rituxan Infusion in good spirits. I guess the lower dose works well with you. Good day!

    Cynthia Bowers @ Bay Area TMJ & Sleep

  5. What a wonderful adventure you had there! My husband and I recently went on a nature retreat and he absolutely loved it. We will be doing it more often now that we did it the first time around. Glad appointments opened up. Stay strong, and I am sure they will find the source of all those headaches you are having.

    Farrah Greenough @ U.S. HealthWorks West Sacramento