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So frustrated

I am so sick of healthcare providers blowing off my concerns and not explaining things to me. When I had COVID, no one thought it mattered that my oxygen levels were dropping at home when I was moving around because they were fine at the clinic and hospital while I sat there. No one will tell me why I supposedly don't need to be concerned that my heart was enlarged on my last CT. And the doctor I saw after the hospital because I couldn't get in to see my primary, blew off all my concerns and told me that either all the issues were caused by dehydration or that it wasn't an issue at all. Didn't matter that my labs showed I was not dehydrated, and that it's not normal to have a pulse over 120 for 8+ hours straight. And the acting like I'm exaggerating the memory and cognitive issues I've had since getting COVID is driving me nuts too. Plus, I've been dealing with this stuff for years because I usually don't wheeze when I have an asthma attack so most doctors assume that because there's no wheezing I'm fine and just making it up. Or having to explain to doctors that I am immunocompromised so that infection they think is going to clear up on its own definitely won't.

So still having a ton of issues that need to be handled. But I don't have anyone to go to appointments with me, and I don't have the energy to fight with all these doctors who don't know me and won't listen to me/take me seriously. So now my friends and coworkers (and probably soon my family) are on my case because I am putting my foot down and refusing to be seen by any healthcare provider who doesn't know me. At this point it means I have to wait longer to get seen to address all this stuff, but I honestly would rather wait and risk something happening while I wait so I can see a healthcare providers who knows me and my history and will listen to me and explain things well. So have to wait almost a month to see my primary, but I did at least let them put me on the wait list in case there's a cancelation sooner...I think the scheduler thought I was nuts for taking that appointment since heart issues are one reason I need to be seen but I'm over it.

I finally told someone that I am so fed up with this crap, that this is a hill I'm willing to die on. I shouldn't have to fight to be believed and taken seriously as a patient. #COVID #SinusTachycardia #Hypogammaglobulinemia

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Health freak my entire life yet I suffer with rare disease complicated with IBS and severe food, meds and every grass, dust and mold known to man. I self treat as doctors have’t a clue!


This last month has been a roller coaster ride for me. My RA has been giving me fits and to top it off my electrolytes keep getting out of wack. I’m on Simponi infusions every 8 weeks, have hyperthyroidism, osteoporosis, osteoarthritis, PsA, thrombocytopenia and heart problems. I’m fused from C-3 to T-1 and L3 to S1. I need a hip replacement and that is not possible due to my severe osteoporosis so my rheumatologist is starting me on Prolea my next infusion at the end of June. I just had an injection in my left hip to try to help alleviate some of the pain but the general anesthesia caused all kinds of havoc with my heart and a trip to the ER for chest pain. I have had two stints placed and still have a 50 % blockage in the LAD that they did not stint because it needed to be @ 70%. I’ve finally been able to reverse the electrolyte imbalance which helped with some of the spasms and bone pain but the anxiety I have from all the above is going to throw me completely over the edge lately. I have two bad heart valves. I’m so tired of being sick and tied and not being able to do the things I want to do. I’m a retired ER/ ICU nurse so idle time has never been in my vocabulary. I’m going insane here. I haven’t posted in a long time I’m more of a reader and do pray for each of you daily. I just feel so lonely here. Just needed to vent that’s all. I appreciate your time if you read this far 😁 #Anxiety
#Hip bone on bone


Shelter In Place? I'm Used To Staying Home

Being stuck at home is new to many people. But I started sheltering in place in 2013 when I was diagnosed with Lyme disease. I spent three years on IV therapy, seven days a week, and walked only to the bathroom and back. The years after IV therapy was just as rough.

I required assistance with everything. The pain unbearable–going to the bathroom, taking a shower, walking down the stairs were so difficult. Mentally I struggled, too, trying to remember to make appointments and phone calls I needed to. I couldn’t even handle putting my medicine in the case each week without mistakes. I felt so much guilt.  I thought my husband would leave me as soon as he could, or maybe he would have an affair. Why couldn’t I keep up with showering and fixing my hair? When was the last time I wore makeup?

But I have learned to overcome my guilt by dealing with facts, not fears, and knowing I can handle whatever reality throws my way.

In addition to Lyme disease, I’ve been diagnosed with fibromyalgia, cognitive dysfunction (which includes lack of balance), and Dementia. Dementia is the real kicker. There are a host of other ailments I suffer from, and I’m sure I will have more as the years pass. I was told early on that Lyme would cause problems that seem unrelated for years to come because there is no cure and my immune system remains compromised. This past month I found that to be true again when.

I was diagnosed with a new immune disorder, hypogammaglobulinemia. hypogammaglobulinemia is a problem with the immune system that prevents it from making enough antibodies called immunoglobulins. Antibodies are proteins that help your body recognize and fight off foreign invaders like bacteria, viruses, and fungi. Without enough antibodies, you’re more likely to get infections. People with hypogammaglobulinemia can more easily catch pneumonia, meningitis, and other infections that a healthy immune system.

This makes the COVID-19 pandemic especially scary for me. I get stressed out when I watch more than an hour of news a day, or see people not wearing masks.

In general, though, I’m very used to having to stay at home. I quit driving years ago and have only driven a handful of times in recent years. It’s not that I couldn’t drive, but my husband came along to take notes at appointments since my memory is not what it used to be. Don’t get me wrong. I miss the independence of driving without my husband having to take off work. I also miss being able to see my hairstylist, getting a manicure, and finding great spots for taking photos.

I have to get out of the house for my mental health, at least a little bit, regardless of my immune deficiencies. We still go for a Starbucks run as often as possible. We have a whole sanitation process down, including wiping down his mask, credit card, steering wheel, and both of the top of our cup to the bottom. We take all precautions when he brings groceries in and packages, we wash our hands immediately and wash again after putting everything away. He doesn’t want me to get sick, and I know he does everything possible every time he leaves the house.

I’m ready for this to pass and it will pass, but for now, I’m staying calm and entertained indoors as best as I can. I hope you can do the same.

In Health,



Please Don’t Make Me Choose

I’ve been teaching with my current school district for eight years. As a career changer, I have university level experience teaching art, an MFA, as well as a degree in special education. I live alone, and my school is my family. I’m devastated to not be able to see my children every day. As an art teacher in a school that practices inclusion in specials for self-contained students, it’s critical that I have this dual background in special education and art. Unfortunately, I also have a rare primary immune deficiency. This means that without infusions weekly, I don’t have antibodies to fight off illnesses. Because of these life-saving infusions, I’ve been able to teach successfully with rare absences since I was diagnosed. Unfortunately, the immunoglobulin therapy that I use will not have COVID-19 antibodies in it until next year. I see upwards of 500 students a week.  Teaching is my life. Please don’t make me choose. And if I do choose, I lose my pay, I lose my insurance, and even if I can get another job with insurance, it could take six months for me to be approved for my immunoglobulin therapy again. Please don’t make me choose.

I want nothing more than to return to my family at school. I have students that contact me daily and weekly during the summer. I directly benefit from herd immunity. I want to return to school to teach my students. Right now, the numbers keep skyrocketing, and I’m terrified for my life. I’ve already had several of my students hospitalized with COVID-19, so I know that my students are vulnerable as well. I know their families are vulnerable as well. Many live with grandparents. This is not about one person, this is about all of us. We know that if we return to school now, we are all at risk. What is the number of deaths that are acceptable to us? Is it acceptable if I die? What about my principal? Is it acceptable if my second grade student with type one diabetes dies? Is it acceptable if the student who has yet to be diagnosed, and whose parents have to return to work because we value money over safety, dies-because their parents thought they were healthy? Is it acceptable if a first grader dies because they use their mask as a toy, because they are six years old? Is it acceptable if I die because a six-year-old used a mask as a toy? Because they are six years old and that is what they will do.

Teaching is my life, these children are my life, please don’t make me choose. #onlywhenitssafe

#CVID #PrimaryImmuneDeficiency #Hypogammaglobulinemia #COVID-19 #TeachingWithadisabilty


I almost died giving birth to my son, and it saved my life

I almost died giving birth to my son and it saved my life. The triggers of PTSD (PostTraumaticStressDisorder) are live changing. I’ve been told that my responses to triggers are ‘just anxiety‘ or ‘hypochondria.’ However, when you’ve had multiple life-threatening conditions ignored by medical professionals and friends/family alike you become conditioned to the flight or fight response that is so deeply rooted in the aftermath of traumatic life experiences. I had several odd health experiences that seemingly started in high school after my recovery from mononucleosis. I experienced overwhelming fatigue, widespread body pain, neurological symptoms like dizziness and faintness, and heart palpitations. I mostly learned to live with these symptoms after multiple trips to urgent care, my primary care physician and even the emergency room turned up with no answers. I settled on the idea that nothing could be done, despite my gut knowing that something wasn’t right. In my mid-twenties a CBC turned up low globulin levels in my blood that sent me into a whirlwind of testing- the result, idiopathic hypogammaglobulinemia– an immune deficiency of unknown origin. At the same time, I was having gastrointestinal issues, vomiting after meals, early satiety and was diagnosed with gastroparesis after a gastric emptying study. I was told that these conditions were unrelated. So, I went about my life adding two more layers of complexity to my medical mystery. Entering my early thirties, I decided that I would like to try for a child. With my diagnoses and my suspicion of other underlying health issues, I went to see all of my related specialists, PCP, Immunologist, Rheumatologist, Gastroenterologist to consult whether it would be safe for me to have a child- the overwhelming response was YES! I became pregnant and I felt better than I’d ever felt, until 33 weeks gestation- I began swelling with pitted edema and my blood pressure became erratic. I was told that home blood pressure cuffs ‘aren’t accurate’ and dismissed. After an especially high blood pressure reading I went to triage at the local hospital where I was scheduled to give birth. My blood pressure read high and I had protein in my urine, but I was sent home with little to no concern or recommended plans for follow-up. Right quadrant abdominal pain woke me up in the middle of the night the next day and I called the on-call OB GYN to report what I was feeling, she told me ‘Oh, it’s about to rain tomorrow, you pregnant women are like little walking barometers, it’s nothing to worry about- today isn’t your time.’ I trusted the advice, I made a pact to myself that I would wholly trust the medical professionals and my body through the process and so I did. Within the next 12 hours I was in the hospital, this time with debilitating right quadrant pain and now my blood pressure was highly elevated, the platelets were low and elevated liver enzymes- I had full blown HELLP syndrome, a rare and potentially life-threatening pregnancy complication. I was induced and told best practice for this situation was a vaginal delivery. My condition worsened and after 24 hours of labor and significant decline in my condition, my son was delivered by c-section at 35 weeks to the day. He was a small 4lbs 14oz but I was told that he was otherwise healthy- phew- I did my job- and I was whisked away to the ICU. When I finally regained consciousness, they brought me my son, he was perfect. I help him with the help of family and medical staff and I feel completely in love and I knew immediately I would do anything for my child. We started feeding my son and he vomited blood and almost immediately green bile. The nurse told me that the vomiting was ‘just birthing fluids.’ This time, I didn’t trust the medical staff, I didn’t buy this story so I insisted he be returned to the nursery for examination. The medical director returned a few hours later reporting that my son was not well and that his condition was declining rapidly, they were unsure what was wrong. I urged them to get prompt care at the highest level and to transfer him to another facility if that was necessary. He was transferred and went through 3-days of back-to back surgeries, he had suffered a volvulus as a result of intestinal malrotation- he lost 85% of his small intestine and was left with the diagnosis of short bowel syndrome and given an ostomy, g-tube, broviac catheter and total parenteral nutrition. We weren’t made any promises. We stayed 3.5 months in the NICU until our experience there proved that we needed a more specialized team- we transferred our son to a hospital that specialized in this population. We rehabilitated his bowels for almost 7.5 months before we were discharged home with a tube and total parenteral nutrition. I became my son’s nurse (as we were not offered any medical care), mother and fierce advocate. I made it my mission to give my son the best possible outcome despite his diagnosis and established excellent therapists, fine tuned his medical management, read journal articles and networked with others in the nutritional support community to learn best practices. During this time, my health took a downturn, I began dramatically losing weight, passing out, vomiting regularly and became weak and feeble – all while putting everything I had into my son’s wellbeing. Throughout my advocacy- I encountered individuals with many different diagnoses that resulted in situations similar to my son’s (ostomy, broviac, TPN, G-tubes) and a light-bulb went off. WAIT – I recognized many of their symptoms beyond my son’s – these were MY symptoms. My son’s rare and complex condition led to the resolution of my years of mystery ailments. I learned about connective tissue disease (EDS, Lupus, Sjogrens) and how these disorders could lead to my symptoms and pregnancy complications. I also learned that autoimmune disorders can be the result of immune deficiency (my hypogammaglobulinemia was something to be concerned about after-all), My widespread itching and hives were a product of mast cell reaction disorder and the list goes on. I consulted a geneticist and FINALLY got answers to so many unanswered questions that I’d archived over the years and the treatment my body desperately needed. My son is now off of TPN and his SBS is stable, I’m not cured, my conditions are chronic but my care is being managed- neither my son nor I are ‘cured,’ but together, we made it- I saved him and he saved me. Now we navigate a life together of RareDisease management and I continue to invest my time in advocacy for the chronic and RareDisease community. I am grateful for where my son and I are today in our health journeys, although far from perfect. The most unfortunate piece of all of this jigsaw puzzle is the misguided paths and resulting misfortune of significant delays in diagnosis and care- is that in addition to all of the diseases and disorders that my son and I are up against, I have added PTSD (PostTraumaticStressDisorder) to the top of my list- the figurative here on top of all of this. So, today I manage active ChronicIllness and try my best to cope with the misfortunes of my past. Regardless of how positive I am in my life, the relentless wake of PTSD settles upon me and asks me to relive my responses to some of my life’s most difficult and heart-wrenching moments. June is PTSD awareness month, my hope is that more research, counseling and support are available through the transparency of this disorder.

#PTSD #ChronicIllness #RareDisease #PostTraumaticStressDisorder

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How many Potsies or peeps that get Igg infusions go get IV hydration? Does it help??

Does it help you?? How many times to u get it and how long does it take to help? #Potsie and #PosturalOrthostaticTachycardiaSyndrome #Hypogammaglobulinemia


Shelter in Place, Social Distancing, Chronic Illness, No Problem

I started sheltering in place in 2013 when I was diagnosed with Lyme Disease. I spent three years on IV Therapy seven days a week and walked only to the bathroom and back. The years after IV Therapy was just as rough.

I’ve been diagnosed with Fibromyalgia, cognitive disfunction which includes lack of balance and Dementia. Dementia is the real kicker. There are a host of other ailments I suffer from and will have more as the years pass. Lyme Diseases like many other chronic illnesses cause other complications.

I was told early on that Lyme would cause problems that seem unrelated for years to come because there is no cure and my immune system remains compromised. This past month I found her words to be true again.

I was diagnosed with hypogammaglobulinemia last month. It’s an immune disorder of the blood. hypogammaglobulinemia is a problem with the immune system that prevents it from making enough antibodies called immunoglobulins. Antibodies are proteins that help your body recognize and fight off foreign invaders like bacteria, viruses, and fungi. Without enough antibodies, you’re more likely to get infections. People with hypogammaglobulinemia can more easily catch pneumonia, meningitis, and other infections that a healthy immune system.

If your hypogammaglobulinemia is severe, you may get immune globulin replacement therapy to replace what your body isn’t making. You get this treatment through an IV. The immune globulin comes from the blood plasma of healthy donors.

I see a Hematologist on May 19th and look forward to what they have to say. I doubt labs will be open by then but she has my last lab work and doctor’s notes.

I quit driving years ago and have only driven a hand full of times in recent years. It’s not that I couldn’t drive but my husband came along to take notes since my memory is not what it used to be.

I’m very calm, I have a mental illness, Bipolar Disorder and my meds are working brilliantly. I met with my Psychiatrist and Therapist last month who both said I looked better than I have in years.

I’m ready for this to pass and it will pass but I’m perfectly calm and entertained indoors while my husband takes meetings in his office. The biggest problems are the four-legged kids who like to get into barking matches.