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Primary Lymphedema: It's not just about swollen limbs

My mother has primary hereditary lymphedema and so did my grandmother. My grandmother died of sepsis after having a hysterectomy at 38 years old. My mother is 74 and has struggled with the consequences of this condition all her life. When I was late teens my feet would swell a bit in the heat or after a night out dancing. When I was pregnant with first two children, my feet would swell but I was told that was normal in pregnancy. It wasn't until I was pregnant with my third child at 29 that my feet and legs started to swell hugely and they never went down. I was told it was due to blood pressure, which had risen in pregnancy and was put on diuretics and BP meds. Neither did anything for my swelling. That was 18 years ago. In the last 6 years my career has become deskbound and, as a consequence, my weight has increased by around 25kg (or 55 lbs). I can no longer fit any shoes. Any insect bite causes huge reaction that often requires IV antibiotics. I have had a few cases of cellulitis over the years. 9 years ago my right arm swelled massively and I had a subclavian blood clot (DVT in arm/shoulder) removed, first rib excision and a jugular turndown procedure to try and construct a new vein. I've never paid much attention to the diagnoses of my mother and grandmother but, two years ago I had a punch biopsy on my left breast. I was told the risk of infection was 1% and that it wouldn't be an issue. The following night I was in Emergency Department getting IV antibiotics for huge cellulitis reaction to infection. Three weeks later I was hospitalised with non puerperal (not breastfeeding or lactating) mastitis and ended up with sepsis, as three IV antibiotics would not stop it spreading. Finally one worked and I was released. A year later (May 2023) and I'm sitting at dining table and suddenly get a stabbing pain in left breast where had infection a year prior. By next morning I'm hospitalised again with non puerperal mastitis and am in hospital on IV antibiotics for over a week until it started to subside when they finally used the only antibiotic that has worked, flucloxacillin. This is when I started to research primary lymphedema and when I found how easily our body overreacts to minor infection etc, due to our sluggish lymphatic system. Then I found a sub type of hereditary lymphedema where a certain gene is responsible and often there is an extra eyelash condition present
I am now wondering if of a lot of my issues are actually due to this condition which I've never actually been diagnosed with. Hard here in New Zealand because our medical specialists are near to non existent. I have two daughters and a cousin (maternal side) with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Really interested in how these genetics are working. So keen to hear others' experiences.
#Lymphedema #primarylympedema #nonpuerperalmastitis #Ptosis #Sepsis #Cellulitis

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I talked to myself many times, and yes, I answered to myself. I wonder how many of you have conversations with yourself. No doubt I feel lonely and isolated many times, and I wonder if will find MY PERSON one day.


I LAUGH A LOT! And I like that about myself because I have fun with myself, I AM PROUD OF MYSELF, because I have managed to find wonderful coping skills to survive, and so, YES, I tell myself, I LOVE YOU!

NO DOUBT, I'm imperfect, full of asterisks, commas, exclamation points, and yes, question marks, but....with my rambling I SEE MY SHINING, MY CONNECTION TO ALL THAT IT IS, MY HELPING MANY PEOPLE AROUND ME.

I don't have to ask if I have made a difference in this world, I KNOW IT. Is this pretentious? Is this crazy? Is this WEIRD?


I know you are there, I have my open arms willing to hug you, and my eyes sparkle connecting with my SPECIAL YOU, and with all of you. Simply, I AM ALIVE!


Maybe I am a WEIRD SURVIVOR, #survivingstill

AM I WEIRD? FEEL ME! because I am willing, to be the supporting EQUAL SIGN, that knows it will never be EQUAL because we'll be changing every day, but SO willing to LEARN each day.


Because somehow, I AM HERE, even in my dreams. My subconscious lives with the second-by-second fight or fly, while my consciousness knows: THE RIVER OF LIFE is rocks, fish, water, atoms, energy, and dirt.....WE, THEY, US, YOU, and Me.


#Survivors #Anxiety #PTSD #againstageism #stopthehate #Hope #MentalHealth #saludmental #pandemia #Cancer #Sepsis #balance #Love

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Grief, Struggles, Depression (Wash Cycle Doesn’t End)

I started my #Recovery journey in 2014 and I found a new way of life immediately. No one warned me the NEW was NEW Chapters of Life, Chapters which would not finish before the next starts….
In 2014 I had to have a #lumpectomy from my right #breast .
In the beginning of 2015 I was served #Divorce papers. By the end of the year we reconciled.
In 2016 when I should be excited my eldest is graduating from High School, simultaneously my second born had to have #OpenHeartSurgery .
In 2017 second born lost his first grandmother and I got to fly him from CA to ME to see her take her last breath.
In 2019 I was the proud #homeowner with my #husband of 10 years. We were finally making the #americandream .
In April 2020 I get a phonecall my father has had a #brainstemstroke I had to come home to Maine to assist with #lifeendingchoices .
In May 2020 my Mother is diagnosed with #OvarianCancer .
I am now temporarily living with my mother, being a #Caregiver , yet my #husband #mycaregiver #Abandoned me and then requested to take #fullcustody of #ourdaughter via the #Divorce .
In July 2021 my Mother sadly passed away. I have become an #Orphan too quickly. #Grief and #Depression is all too real now.
In March 2022, My second son has now come down sick. Doctors spend months trying to figure out why. It takes until July 2022 to diagnose him with #Sepsis #Endocarditis he spends 2 weeks #hospitalized and another 8 weeks on a #PiccLine at home.
In Dec 2022 he is given a clean bill of health and decides to come live with me in #Maine .
In Feb 2023 he starts to become tired easily, slight cough, and finally passed out in March.
March 10th he passed out at home. We called #911 and the #localer #Misdiagnosed him.
March 13th I took him to #mainemedicalcenter where he was hospitalized for 7 days with #Pneumonia and possible #Endocarditis where he was then transferred to #boston .
March 19th upon arriving to #brighamwomanhospital - #shapirocardiovascularcenter he underwent dozens more blood testing, procedures, exams, etc.
Today March 27th he is having #OpenHeartSurgery Number 2 to replace the pulmonary valve, pulmonary conduit, remove large vegetation.
In a couple of days as scheduled I am also supposed to exchange visitation with my daughter so I can visit with her for Spring Vacation. However my ex is trying to knit pick about my schedule and if I have ample time to spend with our daughter while my adult son is in ICU. Our daughter is 11 years old.
I really feel in the last multiple years I have had one catastrophic event after another without time to process.
I have other things like major moves, loss of therapists, and other medical mental health issues. I am so exhausted today scared sick for my son.
I am so annoyed how some people enjoy kicking others while they are down.
I don’t even know when I am going to sleep again right now. I have so many thoughts, concerns, to do’s in my head - I can’t sleep it is going to drive me crazy.
I am so sick of being in a chapter book that doesn’t let the chapters end.

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The Aftermath of Fighting

My fight began in January 2020, with a dx of Iron Deficiency Anemia and acute Asthma. I was fatigued at the slightest attempt at housework, or movement, for that matter. By May I was struggling with Chronic Back Pain and Depression.

In August 2020 I started PT for my back pain, until April 2021, and it worked. On August 18, I had a plan for suicide, but there were no beds available in my local hospital. So my Psychatric Nurse started seeing me daily until I could get in to see my new Therapist in September 2020.

I have been fighting Depression for a year and 10 months. I have had two definitive suicide plans, and have been hospitalized in the psychiatric unit 4 times during this period.

In this time, I have been dx with Degenerative Disc Disease, Osteopenia, Fatty Liver Disease, and Atrophy of the Optic Nerve, on top of my already known list of invisible illnesses.

I have fought against everything with changes in diet, medications, supplements, and exercise.
But I can't do anything about my loss of sight.

It was first discovered at my annual exam with my Opthalmologist in March 2021. He sent his report to my Neurologist, who put me through a battery of tests, including a lumbar tap, to find the cause. Nothing. The Neurologist sent all his information to a specialist, a Neuro-Opthamologist, in a city two hours away. My appointment with this specialist was rescheduled THREE. TIMES.

I celebrated my 52nd birthday in August with a grateful heart, because in June I had planned to die that day.

By the time September 2021 arrived, I was mentally and physically hypervigilant. My appointment with the Neuro-Opthamologist was the 24th. Each day I prayed he wouldn't cancel/reschedule. I checked and rechecked my reservations for my overnight stay....boarding my cat, my rental car, the hotel....

On the 24th I drove 4 hours on a route that should have taken two. It was the same on my return, but I can blame the fog for that. I spent three hours in the clinic in testing and talking with the Neuro-Opthamologist. I discovered the damage to my left eye had progressed since my last testing in June, and that I have a congenital condition that makes me susceptible to this Atrophy.
Upon my return home, with the support of my family, I decided to stop driving.

I am still trying to figure out what this dx means for my future.

Saturday, October 2 my husband was admitted to the Cardiac ICU due to Sepsis. Sunday night his lungs stopped working and he was placed on a ventilator. I visited him Monday, prayed aloud and talked with him, then went to my appointment with my psychiatrist. I was hospitalized directly from his office due to hysteria. I was discharged Thursday. My husband survived and is now home on antibiotics.

I am going off grid for at least a week. I need a break.
Blessings to you all.♥️🙏

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Help Please

My husband Kevin texted me yesterday that he was in the hospital due to shortness of breath, a 103° fever, and a severe UTI. We talked by phone.

I went to the hospital last night about 9:00 pm, after visiting hours, with hospital permission, as Kevin had to have an emergency surgery to place a stent in between his kidney and bladder due to a kidney stone. I stayed until midnight, when I was told he has sepsis, and his blood pressure was dangerously low. He was transferred at that point to ICU, and he is currently on a double IV of antibiotics and norepinephrine.

When I was at the hospital today with his brother and sister, he was conscious, alert, and oriented.

Earlier this evening when I called to check on him he was starting to become confused, and his nurse was working to find out why.
Please help me pray for him.

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Don't quit ..... #Depression #Anxiety #CheckInWithMe #Insomnia #Bekind #youmatter #Selfcare #loveyourself #COVID19

Soo... I am still extremely unwell , I had to get my medication today and I thought I would be OK enough to go the 5 minutes journey to collect it from outside the store as obviously I am still in isolation and I could wait another day as my pain is too bad. So I thought I'm sure I'll manage ....
I am usually such a fit person , I go through my skin cancer surgeries, my endometriosis, my biopsies etc and I always just push on and get through it ...
This is the worst my body has ever been ... it is so bad that it can't fight the usual things it does and isn't coping with my usual symptoms in the way It usually does.
My body is soo drained and exhausted right now that I am feeling ever pain , I am so aware of how much I am struggling and I today after trying to manage this one task realised how much I making mh body worse by not giving it the rest it needs.I am pushing it too hard and yes usually I manage but this time I didn't I took a major bad turn at the chemist my body body went into panic mode ,I took a bit of a seizure and my body just about coped . I obviously still wasn't listening to my own body thinking I'd be fine !!! NOW I know and after that experience I am lucky enough to get home with help from my neighbours and back in to my bed .....
It's not a matter of knowing il be OK in a few days or giving myself a time ....My body is clearly had enough of that and will be ready and refuelled when it has had the time to heal and get better .....

So moral of the story is I need to realise that it's not my choice ,I HAVE TO REST and it's not giving up it's listening to and learning to respect my body for all the amazing things it has got me through to now know I need to do this in order to be Me again .....

#Depression #Anxiety #CheckInWithMe #Insomnia #Bekind #youmatter #Selfcare #loveyourself #alone #COVID19 #ChildLoss #Sepsis #melanomasurvivor #ItsOkNotToBeOk #rest #recover

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A little piece of me that I hadn't shared yet ......

Soo I am still in here still suffering severe covid,pneumonia, damage to my lungs ,liver ,blood clots, problems with my bladder ,on breathing ventilator and now also dealing with sepsis.

I have bene in over 2 weeks now but what I hadn't shared was that we had found out I was very early 8 weeks to be exact expecting.we where overwhelmed, we were nervous, we were excited and thinking everything in a rush of that sudden breath taking plan making moments when you think you are just at the beginning and have all this to be our fresh start and to focus on and be our little family .....

I then 4 days after found out I had started to miscarry , I found out that I had caught severe covid and its caused that as my body wasn't strong enough , now the bleeding has caused sepsis which I have to also have now to be treated for with steroids and antibiotics....

So on top of already dealing with my anxiety, depression my loneliness which I usually prefer as my own comforts and time , I am also now dealing with the physical, mental emotional and hurt when all I need and want is a cuddle and to be hold or to cry and to have to know feel like this utter excitement and brief moments I was having has all now just being ripped away without even being able to think about it for a second or be able to talk through with my partner.....
Anyways I am hoping that someone somewhere may be needing to hear some of this today or I can help someone.

And I want to be able to remember them if they need to hear it ....

#BipolarDepression #Anxiety #CheckInWithMe #Insomnia #Bekind #loveyourself #youmatter #alone #pnuemonia #COVID19 #Endometriosis #Selfcare #Sepsis #ChildLoss #Miscarriage


Ovarian Torsion

I experienced ovarian torsion on Sunday. I was in the ER most of yesterday. I have a 5cm ovarian cyst. One doctor was talking surgery. Once he left they basically said because of my "complex surgical history" they were sending me home to wait it out. 🙃🥲 #OvarianCyst #ovariantorsion #EmergencyRoom #NecrotizingFasciitis #Sepsis

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Nervous 😟

Just venting my anxiety. I’ve been in the hospital for almost a week. I was forced to come in to the ER when I woke with a 102 fever and palpitations much more severe than my usual POTS flutters. I was diagnosed with #Sepsis and #SIRS - scary. It took a while for the cultures to come back, but they finally narrowed the infection down to my #Port . Tomorrow I have to go down and have the port removed and have a #PiccLine placed so I can continue getting my #TPN . I’m not usually a nervous person, but I am so anxious about the removal. Could be some #PTSD related to IR and my j-tube days or just fear of the unknown (pain, sedation, etc.). Local anesthesia is not always effective for me so that’s one thing on my mind, plus I don’t like not having all the details ahead of time. 😟
I’m sure I’ll be fine once it’s said and done but this on top of not feeling well has me 🤢
#Disability #Hospital #AutonomicDysfunction #Gastroparesis #TotalParenteralNutrition #Malabsorption #FanconiSyndrome #MetabolicCondition #MultipleSclerosis #Hypoglycemia #AutoimmuneImmunodeficiency #SmallFiberNeuropathy #OrthostaticHypotension #Anxiety #interventionalradiology #AutonomicNeuropathy #PowerPort #Portacath

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Hospital admission out of state

Came out to Ohio to visit my grandparents, especially my grandfather who's home on hospice. Yesterday thought was just flare in symptoms from pushing to hard and doing lot more activity then I'm used to... Well, last night ended up with temp 104.7 and heart rate running 150s all indications I have sepsis yet again! This will be number 15 so familiar with the territory... My palliative team is amazing and they created a letter hitting all the highlights with my illnesses and what treatments work with me. It has been such a help! Would reccomend to anyone with chronic illness, makes admission soooo much easier! Because it's signed by Dr carries a little more weight too. Anyone else have something that helps with admissions? Especially out of state? #Dysautonomia #Sepsis #Hospital #Gastroparesis #PalliativeCare