I am back...finally

Hello everyone. Yes, I am still here. These 7-8 months have simply been a roller coaster ride dealing with different aspects of my health. There is my obvious physical health but then the ripple effect begins. This leads into the emotional health which changes into your mental health. By then, your positivity, your happiness falls into negativity, lack of motivation and into your inner self. In blogging, I questioned how much to share, how personal should I go? The reality of it, blogging is not private, it is on the internet all to see if should find it. My friend Sara reminded me - you are not only blogging, I am sharing my experience and that help and/or inspire someone else facing a similar challenge.  Another obvious answer I guess - as I cannot use my hands to write in a journal, this blog should be seen as my journal typing with my mouth stick. Not that these excuses for being away form blogging but the reality of living with an autoimmune disease that has impacted many of body systems plus having it sink in more that my reality I will need to face is no longer as an abled person but as a disability which comes with a slew of barriers I have not imagined. 

The 3 constant health issues I have been facing since mid-September and despite interventions to hopefully resolve these issues have not been successful. Those issues are: (1) Edema or swelling of my hands and lower legs/feet. The puffiness of hands is a struggle as it is preventing the recovery of my finger dexterity and movement. It is frustrating especially finally being able to find an occupational therapist who would come to my nursing facility to work on my hand/finger dexterity. As I didn’t want to waste her time and she didn’t want to waste my money, we made the decision to put our therapy on hold. A setback for sure. (2) Dysfunctional Uterine Bleeding (DUB): As you can imagine the journey I have had from my GBS recovery has taken a toll on my body including my hormones and nearly being 50 doesn’t help the situation either. Am I pre-menopausal or am I post-menopausal? Who knows really. About a week after my last post in September, I had to be sent to the emergency due to hemorrhaging large clots. What doesn’t help my situation is I am on a blood thinner due to previous clots in my lower legs and lungs. They were able to stabilize me without blood transfusions and a consult to a gynaecologist. In the end, we decided upon surgery (D&C and doing various biopsies) booked for January. Unfortunately, I had another hemorrhaging episode in December sending me back to the emergency. They were able to stabilize me a progesterone drug to reduce the bleeding enough to wait to have my booked surgery the following month. This visit also showed that have issues with anemia/iron deficiency which I am now taking iron supplements. (3) Indwelling Foley catheter complications. Being a quadriplegic and having neurogenic bladder due to GBS, I require having an indwelling Foley catheter which captures my urine as I have no real control on bladder anymore. I have a catheter from the start (it will be 4 years in September), and it definitely not fun to have. Having extreme sensitivity with this disease throughout my body, when it comes to changing the catheter, intense pain which usually leads to crying as I release the pain I am feeling. There is the most common complication one gets is recurrence of urinary tract infections (UTIs). Definitely had those but what makes it difficult to treat is I know have an antibiotic resistance organism (ARO) - ESBL (enterococcus (E.coli)). Having recurrence of UTIs, one of the residuals is having debris left in the bladder. Having this debris is frustrating and annoying as it leads to dealing with hematuria caused by irritation of the bladder as well as multiple catheter changes. Again, similar to the DUB, it doesn’t help being on a blood thinner. The debris eventually does get released but what it does is block my catheter (along with blood clots) requiring the catheter to be changed more frequently. And the cycle begins. Over a 12 week period in the fall, I had to have 10 catheter changes due to blockages. In February I had a cystoscopy with flushing. It doesn’t seem to have worked - in last Tuesday (May 13), I have had 2 catheter changes. 

So dealing with all things constantly can become overwhelming and brings you to the edge and you yell out in frustration and tears “I AM DONE! I AM SO OVER THIS! Then I receive wonderful supportive encouragements from family and friends while the pain subsides, you find the courage to face it whenever you get to that point again. Thank you everyone for sticking by me with love, support and encouragement to get through these low points. I have mentioned some of my experiences through these 7-8 months on Facebook, so my blog will be a bit of a yo-yo of writing from the past experience as well as present. So bear with me 😊