Down, down, down .... wayyyyyyy below my maintenance weight ... can we say stress? or making joy happen in spite of all the odds? Life certainly is not easy and neither is embracing joy over misery but perseverance, endurance and a little bit of help and love from our friends certainly carry one a long long way....
Last week ALL HELL BROKE LOOSE IN MY LIFE ... for real ... because when your child is rushed to the ER and immediately hospitalized on the nephrology floor to have her kidneys flushed with abnormal labs with CPKs running over 17,000 (no typo here) a rash in the shape of a mask on her face and arms and upper body, facial swelling and difficulty swallowing ... and is flushed with constant IV drips at 300 ml/hr, biopsies of her skin being done and I am being told she has either lupus or polymyositis ... high troponin levels which mean that whatever the disease is it is affecting her heart muscle ...
My heart froze and the fingers of fear gripped my windpipe and the lump that I am too familiar with when I am in distress clogged my throat... yet I smile and maintained an exterior strength for the benefit of my beautiful daughter so as not to cause her undue panic which she was already on the verge of ...
We were in for one shock after another ... I had rushed her to the ER two months ago with the horrible swelling and rash that we attributed to an allergic reaction to something ... strange because she never had allergies .. and for two months she was being followed by dermatology and allergists who were baffled at the recurring rash in the absence of positive testing for allergens ...
Her skin biopsy returned diagnostic per pathology for dermatomyositis ... which can be associated with underlying cancer and also increases the risk for cancer ... the C word that sends me into a panic each and every time.... My heart dropped and I died a million deaths when we were told a suspicious nodule/spot was seen on her lung .... I must have lost the first 5 pounds then and there after the first two stressful nights when her output did not match the IV input level and my dear daughter started further swelling right in front of my eyes ... like someone was blowing her up as a balloon ... now they are telling us she needs a CT Angio because of the dermatomyositis and the presence of this nodule ... ohhhhhhhhh I was so freaked out on the inside but looking strong on the outside ... I had to hold on tight because if I ever let go I felt there would be a point of no return .... I banked on my OH friend, a retired nurse who kept me uplifted on the phone along with many others ... I lived through the night as calm as possible, this friend even spoke with my daughter on the phone and was able to calm her down.... I thank God ahead of time for favor ... the CT angio returned unremarkable but because of the disease she will have to follow with pulmonology to watch this nodule closely.
That fear over she was scheduled for an esophagram ... they needed to assess damage to her esophagus caused by this disease as it affects the striated muscles ... and her swallowing mechanism was a bit impaired.... that just have been easy ... contrast and diagnosis right? Hell no... not here ... contrast was silently aspirated into the airway and the test had to be stopped STAT... but not before my DD managed to get contrast into her lungs causing a pneumonitis by the ingestion of bacteria from her throat ... she spiked a temp and was immediately treated with IV Unacyn ... follow-up chest x-ray cleared her for pneumonia...
All this in one week ... and I spent every waking hour at the hospital with her ... the recliner beside her bed was my bed ... yet I did not sleep ... I remained vigilant and I prayed ... I would have switched places with her any day... any time ... with the strong beautiful 6' 2.5" 30 year old young woman who is my daughter ... no one wants to hear that their child is sick....
So here we are ... she is diagnoses with a chronic illness with no cure however with treatment she can be in remission and live a normal life and she can return to her active life and exercise routine too ... She has five specialties in place and will be followed by all ... Rheumatology, Dermatology, Cardiology, Nephrology and Pulmonary.... She is going to be fine .... we have determined that her will to live and her will to live well surpasses any effects of the corticosteroidal treatments and the disease itself ...
My DD is one of us too ... she has never had any type of WLS because she was never a candidate having had a clean bill of health .. so at 300 pounds she managed to lose her weight through mindful eating and exercise and has maintained a 100 pound loss for over 7 years now just with this regime. She maintains her weight between 195-200 pounds which is her normal ... at the end of her treatment and so many IV infusions she left the hospital totally swollen and weighing 257 pounds.
DD came home on Thursday .. where we have been nursing her back to health and strength... She has managed to lose 45 pounds of the fluid weight she gained over her hospital stay ....
I am grateful for embracing joy over misery ... in-spite of all hell breaking loose ... a preacher lady once told me "don't curse your fire, there is victory in the valley" at a time when both my DH and I were about to throw in the towel on him ever getting a kidney ... and he got his kidney and lives because of it...
I remembered not to curse my fire this past week with my DD ... although it was so hard not to ... but I remembered ... and I prayed for whatever it was that was affecting her that it could be fixed ... and while it cannot be cured ... it can be fixed and brought into remission and I am grateful for that...
Through her entire ordeal ... we kept smiling ... although I bet on the inside she was just as scared as I was ... I looked strong .. yet on the inside I was scared shitless ... so much so that I had to pump protein shakes from cans cause I could not eat ... I was besides myself with worry...
This is my daughter naturally her every day look...
This is what she looked like on admission add more swelling to that...
This is her arm swollen and with the rash typical of dermatomysitis and lupus .. I am glad she tested negative for lupus because it runs very strong in our family...
This is us at the hospital...
this is her with added swelling in thighs and arms ... the tissue paper bows were per Pat's suggestion we perk her up with bows in her hair ... I dressed her in pink and did her hair and we determined to think positive and hope for a discharge and outpatient follow up on the morning she was going for a second modified esophagram ... we were hoping for no aspiration and there was none ... we bought her home on Thursday...
On Friday night she was getting a bit depressed with the swelling and her appearance but she was voiding constantly and I told her that all that fluid was on the way out ... I diverted her attention by promising to make her summer maxi dresses that she wanted on the project runway sewing machine that she presented me just because .... I made her her dress on Friday night late and this was us yesterday morning ... mom and daughter ... WILLING TO LIVE ... AND EMBRACE JOY... AND MAKE IT HAPPEN ... OHHHHHH IT IS SO NOT EASY BUT IT IS DOABLE ... AND WE ARE DETERMINED TO DO IT ONE.DAY.AT.A.TIME.
I took my DD for follow-up appointment with her PCP yesterday ... I had to help her get dressed because she still can barely raise her arms much .. her upper body weakness is more pronounced that that of the lower body ... I took her to Olive Garden for lunch afterward and that was pretty much the first meal we really enjoyed after a whole week of one stress after another...
Me and my beautiful daughter ... those scars too will go away... and she will pay it forward and help and testify too as she has been doing with all the other volunteer programs she participates in...
She is determined not to allow the medications to control her weight ... she fully intends to be on top of that as she has been able to manage herself with mindful eating and exercise for the past 7 years ... this is her weight loss collage...
I almost forgot ... today is my 4 years and 4 months post RNY monthly surgiversary.... I was already running below my maintenance weight as shared before and I managed to leave 7 pounds behind at that hospital while I panicked and stressed over my DD .... thank lucky genes for a big butt ... because I think that is where they came off of .... now I need to really BOUNCE ... I am way UNDER my maintenance weight ... and my maintenance weight ranges between 122 and 125 pounds.
This is my before and after collage ... I lost a total of 203 pounds and am keeping it all off and then some ... This bounce was down .. down ...but I will slowly and mindfully build back up to where I am comfortable at.... for now I am enjoying my juicy couture jumpsuit...
Today I am going to a garden reception at 1:00 pm ... I am going to wear the green gown ... I made the blue one last night and I screwed it up royally so I will either give it away or just throw it out...
The rush to the hospital with my DD happened on the very day we were supposed to pick up our #8 ferret Finigan-Beau. When my DD asked as she loves the ferrets I told her we had to skip this time and wait.... we just wanted to make our number of ferrets even to 8 instead of 7. But Al just listens and says nothing ... until he called me downstairs from the hospital ... and there he was sitting with our ferret #8 Finibeau as we will call him for short or MiniFini ... he is adorable ... leave it to AL ... only difference is we were looking for a girl and Finibeau is a boy ... our fur circus is complete now ... that is the last ferret we will get.
I also made a beautiful black doll in a set of three ... one blonde.... one brunette... and one black ... and sent it off to the grandbaby of the beautiful sista who was so supportive to my DD and I during our ordeal not even revealing how upset she was over and event taking place in her life ...
My doll is beautiful ... I have made thousands of dolls and have never sold one ... just like I have painted thousands of canvas and never sold one ... I give them away ...
This is the doll I made ... and I named her Diversity...
Thanks for allowing me to share. I am totally grateful for all who reached out to DD and I and our family through our recent ordeal...
To all I leave these words that were shared with me right here on OH and are very meaningful ... they are not only words ... Finigan wrote this ... she is a cancer survivor and an overcomer ... her story has yet to be told but I will leave that to her ... let no man judge... these two diverse sistas of different belief systems and even skin tones ... have been able to encourage and support each other across the cyberwave ... even reaching out to my DD and comforting her on the phone... her and others... I am forever grateful....
..."there is misery and joy in equal parts in this world. Misery will find us if we make ourselves a target. Joy is just waiting for us to acknowledge it. I find joy every day in all parts of my life and I just let it happen to me. Misery is there but I'm sure as hell not going to invite it in".....
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and today we all are running 5-10 and 20Ks YESSS!!!! on 53 year old knees that were told needed to be replaced because of the damage caused by excessive weight ... but it is not so today ... I HAVE POWER IN MY ACHILLES AND IN MY KNEES AND IN MY JOINTS AND I CAN RUN WOOT WOOT and I LOVE IT!!! I was running my old arse off and enjoying every minute of it ... there I go and I was not holding up the rear either...
