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    I’m new here!

    Hi, my name is BouncingBack. I'm here because this past year has shifted me into a huge 180 turn and I would like to support others as well as be supported. Up until February of this year, I was a long distance runner and an avid exercise enthusiast. Unfortunately, that all stopped when I began to have cardiovascular issues that then became high blood pressure issues. The Drs were unsure what was wrong (as I am 33 and was considered generally healthy) but they put me on meds to control my heart rate and blood pressure. After months, they are finding spinal cord abnormalities and a thyroid issue that needs further evaluation. I can’t run anymore. I thank God I can walk. I am a mom to two beautiful kids. I am a wife and I love my job; I own my own counseling practice and it helps me to spend time helping others. I overcame the grief that came with being a victim of childhood sexual abuse and now I am working on coping with medical issues that are definitely having an impact on my mental health and quality of life.

    #MightyTogether #PTSD


    I'm new here!

    Hi, my name is merrilljima. I'm here because almost ready for tranverse sinus stent for intercranial hypertension

    #MightyTogether #IntracranialHypertension

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    What kind of tools do you use to track your Health data?

    I use my Apple Watch/phone as my main way to track my health data (lol, yes, the data in the images is mine), but I also use a peak flow monitor, data from my Neurofeedback system, blood pressure monitor, data from my CPAP machine…

    #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
    #ptsd #FunctionalNeurologicalDisorder #Migraine
    #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma #raynauds #MentalHealth
    #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe #dying #Hypertension


    Under Informed

    When I was diagnosed with Intercranial Hypertension my Neurologist told me I had Pseudotumor Cerebi, I asked him what it was and he explained, I asked him the risks and he didn't tell me anything except I need to lose weight. I went home and looked it up on my one and found it on the government medical library website, thank God I did. We planned on flying up to see my baby niece and in laws this year, little did I know the risks in flying with Intercranial Hypertension were. Once I saw that I decided I'm never flying again. I've had four spinal taps in the last year and 2 of them failed and caused me severe pain and the wort after effects. Is there anything that alleviates pressure besides a spinal tap? I'm afraid to get one again. I've lost 30 lbs already and still losing but still suffering. Stay strong everyone 💪🏽
    #wearethemighty #ChronicPain
    #ChronicIllness #RareDisease #IIH #iihwarrior #Migraine #Vertigo #VestibularMigraine #chronicmigraine #IntercranialHypertension #CheckInWithMe #checkupwithme #StayStrong #Pain #chronic #neurology


    Post radiation to skull symptoms


    Curious if anyone else has had similar symptoms. I had radiation to the base of my skull in November of 2021. Around March of this year, I started having episodic migraines. The number of days they persist has been increasing, and the interval of days in between has been decreasing. Also, my BP keeps swinging between hypertension and hypotension (too low)...more often hypotension. Cardiologist says heart is normal, oncologist saw nothing on brain except the original tumor. Sound familiar to anyone else?


    A story not often told…or I have not found.

    Last week my younger sister was put on a Ventilator, along with Chest Tubes and Feeding Tube. She is in her 50’s and has been a smoker her whole life. She did not take care of herself, hadn’t seen a doctor in decades, didn’t eat properly and self medicated for years. At this stage of her lung disease, her prognosis is poor. What makes this worse, is It hasn’t even been a year since the death of another younger sibling. Of my remaining family, I see have one sibling struggling with Mental Illness, one who almost died from a Hypertensive Crisis due to untreated High Blood Pressure and another who was born with severe scoliosis as well as many features akin to Achondroplasia.
    The differences in the manifestations of our CPTSD are as varied as the differences in how we learned to cope/survive as children and ultimately as adults.
    So little is written about the history of our lives, from a family system perspective.
    How so many of the choices we made, were not from a thoughtful place (Frontal Cortex) but, from the Amygdala, a place of “fight or flight.”
    How a childhood history of violence and abuse can result in life limiting diseases.
    Some literature speaks to how people who have experienced trauma as a child, are more at risk for Heart Disease, Diabetes, additions…etc. However, these studies do not reflect the whole picture, that involves the family. Studies do not address the feelings of sadness and helplessness, that come from witnessing a sibling’s struggles, chronic illness and death. How sometimes being around each other in our attempt to comfort and support can be triggering because of the shared experiences as children.
    My heartache is tinged with anger that my beautiful siblings, the ones I love so, the ones I tried to protect as children, when I was a child myself, didn’t have the lives they deserved. No one truly understands how difficult it is to caste off the shroud of abuse. To be free of shame, fear and self doubt…unless you’ve been there yourself.
    I know I’m at a dark place right now. One filled with anticipatory grief and anger. It is a place I worked so hard to reconcile through out the years but, it is where I know I need to be and not where I will stay.
    There needs to be more written about our roles within the family as well as the family’s role in us. Especially, as it pertains to a family history of violence and abuse. This too pertains to whether you were an only child or one of several.
    I can’t help wonder how many of you have faced or are facing the same losses or challenges.
    Before I finish, thank you for giving me this opportunity to share and process further. If I’ve said or shared anything that can lead to misunderstanding, I am sorry. This is what’s true for me, or where I am at in my pain, just at this moment.



    So for the last 4 nights I've taken 4mg of Haldol and its not working. I took it 4 hours ago and I just cannot get to sleep for the life of me. I'm wide awake and super hungry.

    My doctor told me he was putting me on less than half the typical dose because hes afraid it'll interfere with the Invega Trinza I'm taking. He prescribed 2mg and said if it doesn't work to tae a 2nd pill but even THAT doesn't work.

    I'm going to schedule a virtual appointment to discuss putting me on something stronger. I feel like maybe he didn't take me seriously when I told him I'm not sleeping. He did say "Well you LOOK fine." Like was I supposed to be crying and begging for help?

    Maybe I'll go wash a dish and eat a warmed up blueberry muffin with some butter. My tummy is calm now thank goodness and I didn't get sick after I ate dinner tonight. It was a long rough day for me so I need some comfort that will hopefully help me calm down and sleep. I've got the home nurse coming at 10:30 and then I've got an appointment with my PCP to discuss hypertension medications. Its going to be another long day ahead.

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    Catering to my girl friends dash diet?

    2 weeks ago I had to call a ambulance? She had a heart attack on way to hospital and ambulance had to pull over and zap her? Sorry can't say right English word? Shebwas in hospital for 2 weeks was sent to south Ontario (Toronto 5 house away) she got operated surgery was a camera that
    Was sent from hip to
    Her heart and its called IP studies came back home Saturday the plate is a dash diet?

    I've created a dash menu from guide lines of the diet? Basically cutting out sodium or very little sodium, pushing more fish chicken and limiting red meat to no more than
    2 a week little more to this diet. Up side is my culinary skills will help obviously lol? I will post these plates and discribing what I've done? To who suffers high blood pressure and needs help dash diet guys it will make it easy? By putting my food on here it will show that it does not mean your not eating good food? Ways around e everything in a kitchen.

    This is a bake salmon( fish is great for this diet it will release there own oil so parchment paper fish seasoning, club house spice is great for this due to low sodium? Always read label) so seasoning is a chopolte low sodium mango seasoning, served over a bed of wild rice (ghee butter is a clearifide butter? Its used for religion and medical reasons, I sudgest this also you can use any oil that comes from a tree, you can buy over counter or infuse your self) the orange sauce is roasted carrots, garlic, mint and honey. Flowers is a self option I just like to use everything from my garden including flowers and its safe to eat, purple is beets that are roasted, there is fresh fig and yellow is a lactose free yogurt #


    Tomorrow's schedule

    So at 9:30am I have a virtual appointment with psych to address the super toxic anxiety and hopefully get put on some meds to take as-needed. I've tried talking to psych in the past about my anxiety and he basically said Nope get your PCP to do it. So I'm not sure how this is going to go... I'm super anxious about it. What if I oversleep/sleep thru my alarm? What if he doesn't want to help? Hes usually a really nice guy who really cares but that last time was just odd.

    Then in the afternoon I have an appointment with my PCP's PA to address the hypertension issues I'm having. For the last 2 months my BP has been running high enough to worry about. 2 weeks ago after walking in my hallway for 5 minutes my BP was 170/99... yeah, its bad. But what if my BP is normal and they brush it off? What if they don't take it seriously? My at home nurse is veery concerned about it, says I'm a high risk for strokes. I'm already a high risk for strokes due to having secondary polycythemia from the testosterone I am taking. I'm just... I can't sleep. I'm too worried.

    Then after I get home from that appointment I have to clean my apartment. I've tried doing that for the last 2 days but its been so hot and humid and I've had trouble breathing. I also can't bend down because I had back surgery just about a month and a half ago. Its so stressful.

    I hope I get thru tomorrow ok.


    Toxic anxiety

    This week is going to be so difficult. Tomorrow morning I've got a virtual appointment with psych to see about getting on an as-needed anxiety medication and then later in the day I've got an appointment with my doctor to address the stage 2 hypertension and get on some meds for that. Then Wednesday morning I've got therapy and then later in the day my zoloft refill is getting delivered. Then Friday I've got an inspection of my apartment by the organization that pays my rent because my building is infested with bed bugs and they've decided not to renew the lease this year and are making me move. They say I can't take my belongings with me when I move, and are planning to replace the furniture and my clothes. I'm so stressed and anxious right now. I just need some peace and quiet in my life so that I can get a handle on things.

    I'm super low on food and have spent too much money on take-out food this month already. My food stamps card is empty till the 11th so I have to wait till Thursday to order more food. I have no meat in my fridge. All I've got are eggs and cans of cabbage.

    What I REALLY want is to get together with a friend for some ice cream and to go play Scrabble in a park. I think that would really cheer me up a lot. I'm a simple man of simple needs. Unfortunately none of my friends want to see or spend time with me. They all live at least a half hour away from me and claim its too hard to spend time with me due to the distance. I know if I had a car I'd make time to see the people that matter to me but I guess sometimes we cannot hope that people will be as compassionate as we ourselves would be.