Strategize and live, my War Plan.

OPOSITIONAL FORCE : 

Own immune system.

THE BATTLE : War Planning / April 6, 2019

ZONE IN TURMOIL :

Kidneys 

CURRENT STATE OF THE WAR :

Entire functionality down to 36% and kidneys are the filtration system to the body.

LONG TERM MISSION : 

Staying alive.

I am desperate to find find my new normal, but I’m also so frustrated by my new state of existence. Call it the vague medical label for what I’ve been living with for the last several months. I had mentioned several times before while the doctors were waiting for medical tests to come back that I did not want to be special. The Sutters Health ER doctor was 90% sure it was Lupus as were the assigned doctor and supervising doctor until the test started coming back. They had figured out that I have an autoimmune system disease that is attacking my body and shutting down my kidneys but I tested negative for all of the Lupus markers. When I had my appointment with my nephrologist on the following Tuesday she gave me the name of what I had and I told her straight-up that it was going over my head. 

 

THE BREAKDOWN : 

What I have is incurable. My own immune system is attacking my body. My kidneys have lesions both old and new and I may never more than 35-45% functionality back. Having degraded 5% in 8 days I’ll take what I can get. I will be medication dependent for the rest of my life. I do finally have answers for my long term and short term side effects. Knowing is better than not knowing. 

FIRST OFFENSE : Destruction of my normal.

FIRST TACTICAL GOAL :

Adapting to my new normal.

FIRST STRATEGY IMPLEMENTED :

"Divide and conquer." 

This paradigm shift of my existence is still so amazingly difficult to mentally process. Being a single parent I need to function and maintain our way of life. I need to survive not only for myself but for my sons, they are everything to me. My world revolves around them, belovedly so. Being a their parent was life altering and though I struggled off and on due to my age and 'just being me' having them was the best thing to have ever happened to me. My mother and her mother as well both just gave up when they became terminal in some way. My grandmother giving up her drive for life, whilst my mom lived only for herself and to hell with the consequences. I am not my mother nor her mother. I am me. I have to survive for them as well as myself.

SECOND OFFENSE : Being besieged by emotional turmoil and mentally overwhelmed.

SECOND TACTICAL GOAL :

Maintaining a positive state of mind and my drive to live.

SECOND STRATEGY IMPLEMENTED :

Try, and even if I fail I'll go down fighting and to give in avails us nothing. 

The presnidone helped me get my mental teeth back, but since my body was still so horribly lethargic all of that spunk went right to my brain and I felt almost manic and fed the anxious. That being said, when the presnidone puttered out after a few hours my brain felt like it was slowly being eaten away again (as was one of my most terrifying side effects) and caused me to panic. I happen to have the mouth of a sailor, so I cursed (a lot) and took advantage of every moment I could to figure out how to put my foot forward and inch along until I can find the sweet spot between meds, side effects, dietary necessities/restrictions, and level of activity. This Second Offense is damn near constant, I'm not going to lie. I was attending college classes for a certificate when all of this happened. I had to drop out, of course, but my passion for a sustainable lifestyle while able to maintain/adapt my way of living should be maintained. The fact that gardening, farmers markets and the like get me out doors and moving is all a plus. So, I looked up what I could that was free locally and booked some tickets for the next few months. I checked in with my CSA and caught up with what was going on. I am social for being an introvert. That being said, I knew I needed to get out and maybe join a group but not one for support from others suffering from this. I do not mentally process overly emotional people or situations well and would be detrimental in the short run rather than helpful. Something light and positive with no added pressure of being a pillars for others when I need to be the pillar for both myself and my kids. I also want to point out that I have a licensed therapist that I see on a biweekly basis. Someone who's outside opinion may shed light on areas that we may be lacking during periods of enormous emotional strain is key to surviving.

BLOG

THIRD OFFENSE : Information gaps and disconnection between multiple medical service providers. 

THIRD TACTICAL GOAL :

Figure out how to best help myself so that I can help my doctors and support team. 

THIRD STRATEGY IMPLEMENTED :

Taking the point position and managing my own information. 

Hospitals and health providers try to coordinate as best they are able but they all have different computer systems, apps and way or organizing data. Once again it's my headlong, if be it slow, race forward to finding out what I need to do to maintain my existence. I have never been a 'stand by the wayside' type of person. It simply isn't in my nature. I had tried looking into my health condition, but I knew that I hadn't mentally gotten up tp it just yet. So, I need to manage the details and get them going. The more information I could give to my medical support system the better. I then continued by figuring out the data points I would need to hit based on the questions my doctors and nurse practitioner had asked me. Being a graphic designer as well as a fangirl of beauty paired with the simplistic I wasn't sure what I was going to find. We all have our quirks. I just happen to start mentally running away if the apps/tangible thing/software/hardware don't serve a specific purpose and are easy on the eye. I spent the better part of a day visiting lupus and renal oriented websites/blogs downloading, installing, trying and uninstalling so many before I ended up with a heavy handful of possible and continued whittling away at it. I based each choice on : the amount of time that needed to go into maintaining the app; what data points that it covered; how well sequenced it was with other apps if I was unable to find one app that covered all of my needs; and of course how visually pleasing while also being navigationally easy. I am still working out a few of the idiosyncrasies of them in order to get the most optimal use from them. I figure this is a long term battle but, the sooner I have one more issue in-hand I can focus on sliding the next step forward and back to my new normal. 

APPS

FOURTH OFFENSE : Food and hydration. 

FOURTH TACTICAL GOAL :

Learning what was a YES, a Very Little or a No.

FOURTH STRATEGY IMPLEMENTED :

Information gathering. 

"Knowing is half the battle." -G.I. JOE 

What goes in matters more now than it ever has in my life so, I focused on the food. Found what frustrating tidbits I could from reliable sources and made myself a list. I cleaned out my kitchen of almost all the foods that did not belong to either of my boys that was now banned, with a few exceptions with a mindfulness to severe moderation. Looked through an app I already had on my phone and started browsing for what I could eat and not get easily bored with. Food has always been a small way to treat myself right. I wouldn't buy more stuff, but a coffee or sweet from a cafe I enjoy was a delightful indulgence. I get easily bored even though I only very, very, very rarely get fast food. Think once in a blue moon and honestly, alcohol is in the same boat. I am shoddy at remembering to eat, and due to side effects struggled to finish off a single apple in two hours of time. 

DIET

FIFTH OFFENSE : Physical limitations, side effects, and overall health.

FIFTH TACTICAL GOAL :

Getting not only my normal level of bodily health back but steadily improving it for the long term.

FIFTH STRATEGY IMPLEMENTED :

"Slow and steady wins the race." -Robert Lloyd

Basically, every doctors opinion I've read states that the less strain on your overall body the better your kidneys will function. Another foot slide forward I started deliberating on what I can do now and to slowly building back up strength with low impact activity. I recalled seeing about some local groups lead by my local health center that I use. Made a few calls for a current and in the coming months free classes and have already attended one of them. I have long term goals that include : Gigong, yoga, water aerobics, neighborhood and park wanderings until I find that sweet spot. I also made a point to reschedule and check-in with all of the health specialists that I see. I let a few pertinent appointments slip by due my health and I am working on correcting that. I also want to make a note about medication, keeping track and staying right on top of everything is almost half the battle. I have my medication routine to where it is : easy to grab at home; conveniently with me when I happen to be out and about; listed with the prescribing doctors for easy access on my phone, in my wallet and easy to reorder with my local pharmacies app. Helping me help myself is all about listening to my body, medical support team and my head. Taking each day a little toe further ahead.

LINKS

SIXTH OFFENSE : Preparing for the worst.

SIXTH TACTICAL GOAL :

Making sure my two boys are able to function and become healthy adults without me.

SIXTH STRATEGY IMPLEMENTED :

Planning and communication.

I'm going to be very honest, I am a single parent firstly because I asked for a divorce and secondly because their father has already passed away. That being said we are the three amigos. Our household is not run the way I have experienced other households to do so. I was a foster child and had a fairly traumatic and overly complicated childhood. Transition that into becoming a parent while taking care of my terminal mother before she died and I think you get the picture. It's complicated. I have a very healthy respect for life and have always tried to keep my on life as tidy as possible in-case something should happen. Their father dying sort of lit a fire under my bum to really come up with a plan. So, continuing on this path has not been as hard for me as it will be for others. My boys are 17 and 15, so for them this has been a crazy eyeopener. My eldest has really stepped up to the plate and I've made sure they can function just fine during emergencies. Every family member, friend, school or immediate work relation that would be directly impacted by passing or hospital trip is aware of the situation. Communication is key. 

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