I am finally able to provide my readers with a few answers to the daunting questions surrounding my future. While these answers may not be exactly what I was hoping for, at least I now feel like we have somewhat an understanding of the direction my treatment plan will take.
Yesterday I met with my Primary Rheumatologist, (yes I have more than one) he is a kind man who honestly cares for each and every one of his patient sincerely. I always feel I am in good hands upon stepping into his office. We met as a follow up after he and my Pumlonologist conversed regarding my recent decline in health. During the appointment we covered most of my new issues, including the debilitating headaches I have been plagued with these last few months. He ruled out the possibility of muscle tension being their cause; this helps conclude that these headaches are in-fact an internal issue and need to be assessed by a Neurologist as soon as possible. Luckily I have solidified an appointment with a Neurologist at another clinic, though he is not an 'expert in the field' as my last Neuro was, he has compassion for his patients and that to me is the deciding factor whether a physician is an true 'expert in the field.' I will see him in two weeks time so hopefully within those two weeks I can schedule my MRI of the brain and we can get this headache situation figured out in one swoop!
After the topic of headaches we talked about my increase in generalized pain, and other symptoms like dry mouth, scabbing scalp, cognitive malfunctions, and further tightening of the skin. Through blood work we found results indicating that I am most certainly going through a "flare up". A flare is a term used in autoimmune disease patients indicating their disease becoming more active. The rising of my Sed Rate and CRP levels, with the lowering of my Potassium clearly illustrates that I have heavy inflammation happening throughout my body causing widespread turmoil. This flare is also what is certainly causing the failure of my Respiratory muscles with the considerable diaphragmatic function decrease. Unfortunately a flare such as this can be very dangerous to the patient and indicates further progression of disease. This finding is actually very helpful for my team of physicians as it reveals my current treatment plan is not adequately managing my disease.
My doctors have expressed to me the new plan of action, and while much of the plan is subject to different results and findings, it is a good starting point:
1. We will take a few chest images to decipher exactly how well the diaphragm is working. In the case it is severely inhibited we will consider placing a diaphragmatic pacemaker to aid inflation of my lungs, and a few medications that can assist in respiratory function.
2. I am to use my supplimental oxgygen to increase my O2 sats upon sleeping, and upon any physical activity. We will be retesting the O2 saturations during a 6 minute walk test at my next PFT to decide whether or not the O2 should be used at all times. Right now half my team believes it should be used continuously, and the other half believes contrary. Either way at the low liter rate I am on there is no disadvantage to using the oxygen 24/7.
3. We will increase (again) my dosing of the Chemotherapy Rituxan; my infusions will now be every six weeks indefinitely. For those of you that are not familiar with the drug Rituxan, it is a biological chemotherapy that doesn't directly damage the DNA or Bone Marrow. It completely eradicates your immune system by only killing the bodies mature B-Cells. This drug comes without the harsh side effects of hair loss and sterilization since it is not an Alkylating agent; however, you still feel quite awful for a few days after the infusion. I have been on this drug over a year but it has not proved to be very beneficial. It is the last line of defense before moving forward with stronger Chemotherapy agents. We will increase the dose, hoping the drug becomes more potent.
4. If all else fails and my lung function continues to decrease we will move forward with Cytoxan Infusions, a powerful Alkylating Chemotherapy agent that would obliterate my immune system, healthy DNA, and Bone Marrow. This drug comes with all the debilitating effects of typical chemotherapies, but also has a high incident rate of causing Bladder Cancer. Due to this Cytoxan will be an absolutely last resort to save my lungs from further damage.
May will prove to be a busy month in my world, but than again, what month isn't these days? So far I have a few tests/procedures to accomplish: a PFT, MRI, Skin Biopsy, SmartPill Manometry, Lactose Breath Test, and a Rituxan Infusion. I have appointments with my Neurologist, Pain Relief Doc, Headache Doc, Dermatologist, Pulmonologist, Rheumatologist, Gastroenterologist, and my Primary Care. The chronically ill truly never rest; illness is a full time job.
Since my posts have been a bit depressing as of late I thought I would share some good news for a change! I have had many opportunities open to me in the past few weeks that I am excited to share with my readers. I have a few public speaking gigs this month including, an autoimmune seminar at a local University, an autoimmune patient video project, and my support group finally starts late this month! As many of you know I was asked by the Washington State Chapter of The Scleroderma Foundation to lead a local group in my area; I am extremely excited to begin this new leadership role! I am also happy to announce that after a few hiccups with the state due to some incorrect information, I was finally approved for Social Security Disability. It has been a huge burden lifted for my small family to finally have income once again. I have saved the best for last... Are you ready?!
Late last week I received an email invitation to be a contracted guest blogger for none other than The Huffington Post! They have asked me to write for their Healthy Living column to which I happily accepted. While this is not a paid position, I am honestly just excited to write for such a well known company. This will be an incredible awareness opportunity!