“Sometimes walls are there so we can lean on them and rest.”
I’m 53. For the last 41 years I’ve been dismissed, undiagnosed, misdiagnosed, and now diagnosed but the wrong treatments have poisoned my body creating more issues that my functional medicine doctor still cannot figure out. 13 years ago I was diagnosed with psoriatic arthritis and fibromyalgia. I did monthly remicade infusions for ten years. I had maxed out my dose and intervals but it wasn’t helping as much as I thought it should so my physiatrist prescribed prednisone which was my personal crack! Nothing made me feel as good as steroids. And I was reminded of that every time I went off. I decided I’d rather have a life and deal with any side effects later. I started gaining weight, which was expected, and developing inflammation in weird places that hurt to touch more than normal. All my doctors said it was the prednisone and would go away when I went off it. So I did but it didn’t go away and my body was looking more and more out of proportion. The hard painful fibrous lumps around my mid section kept me from sleeping. The lumps on the inside of my knees hitting each other as I walked created gait issues and pain in my hips. My rheumatologist insisted it was fibro. I finally found answers with the help of Google. Of course there are no doctors in my state that even know about this connective tissue disease so I traveled out of state and out of network and got a confirmed diagnosis of lipedema and have since started the only treatment known to treat this, staged surgery to remove the diseased tissue. I can finally sleep! The lump across my low back that made it feel like I was lying on a log was gone. Now I’m dealing with all the residuals from 41 years of unnecessary meds. I’ve completely given up on traditional medicine and I’m putting all my eggs, even though they’ve long since dried up (teehee) in the one basket of a functional medicine doctor. I’m trying to have faith that she can figure the rest out. I just don’t want to wait another 41 years. Thanks for listening.
Chasing doctors is often worse than the pain
I am sure I am not the only one who feels this way. After every diagnosis I've gotten I've felt like, yes I feel like I've found answers. My body then deteriorates more and in new fun ways so it's back at it. Of course, none of these things are obvious to look at me so you have to go convincing people you actually have more things wrong with you. I am recently back on the "please diagnose me with what's actually wrong with me and help me" train and I was really only off of it for a couple of months. I often feel like saying, "Hi, person living in my own body here. Maybe you could listen to me?" With the Covid shutdowns, it's been almost impossible to get an appointment to even be able to say that to anyone. I completely understand the priorities and I don't want to be selfish but the pain is truly awful. #hypermobilityspectrumdisorders #PelvicCongestionSyndrome #Lipedema #BackPain #ChronicIllness #BipolarDisorder #Anxiety
*Immune System compromised +
Autistic, Complex PTSD, Hashimotos, Fibro, Extreme physical dmg & pain due to pedestrian vs car accident as a 12 y/o child; fallout of 30+ years lacking care of self. Extremely empathetic, hypersensitive & aware while being obtusely unaware at the same time.
Gleaned lessons of many lifetimes, my own and culminated from those around me that I hold extreme love and appreciation for; no matter the role or the end result of things that have happened or occurred. I have wishes but I hold no regrets.
I hold no malice though I do hold anger. Anger that I am actively trying to work through, in a healthy way, for the first time in my life.
My breath - your breath - is *everything*. It's your complete control. I know. I know. That probably sounds just a touch hoaky - and if it's doesn't, that's fucking AWESOME! Cos it means you might just be one of my Kindred. What are my Kindred? You ask? Well, I'll explain, in time; but first, we have an AMAZING puzzling maze to get through…
Welcome to Jessy with Why.
Ps, I don't have paper degrees. My education is most all self/networking/people-watching/observation/from MY OWN experience, learned thinking and thoughts. None of which, I'm *certain* are original. I am a collector. I collect information AND, I collect people; for reason & purpose. Come to find out, I have for many many years now, I just -never- knew the reason WHY.
I'm coming closer to figuring THAT out too - and I'm excited to share it with you. Share MY journey and help YOUR help in getting there; even if you don't know you need it as 'badly' as it may look like I need to. Why would you do THAT? Do you ask? Well, the end reason being, (sorry, it's hard for idle chit chat so I try to get straight to the point, with as much jam-packed information knowledge -that's admittedly often side-tracked looking, but *IS* linked- as I'm able to shove in there at the same time, I swear!) because, with your helping me out, it AUTOMATICALLY helps YOU out. That's a win-win. Who DOESN'T like a win-win? Especially when one doesn't have a cost? Well, ok, I take that back. It's a lie. There IS a cost. The cost is something that's actually worth a LOT more than money though. Do you know what it is? Do you know what I'm going to ask for? I'm going to ask you for your TIME. Your time and MAYBE, if I'm as blessed as I believe that I am; if there IS truly, a reason that I have lived through the things that I've lived through, then that means that it might just cost you some of your energy, too…
My base belief, I think, though it might change, it often has, is that controlling your breath can control your pain; with the potential of removing it & letting it go.
Let's talk more - shall we?
💜🦚🐲 Jessy with Why
(purple heart icon, peacock icon, dragon icon)
can I ask for another medication?
hello everybody! it's my first time here. I've got multiple conditions, one of them being immuno deficiency, another one autism, another one a condition that causes troubles with fat metabolism each time I experience a hormonal change and the last but not least - for the matter of today - being PTSD.
I was getting so much better with my symptoms that my previous psychologist considered my therapy was over. than successive stressful events occurred : I've got severely anemic (panic attacks began here), got pregnant, lost the child (at eighths week), couldn't lose the 15kg took in the matter of these eight weeks, got a diagnosis of lipedema, moved from my flat to another one in kind of an emergency, than my partner's dad died and here we are.
my PTSD symptoms have for the most part completely disappeared - and that's pretty cool ain't it? - but the sort-of-panic-attacks and the intrusive thoughts that settled with anemia (a year and a half after the initial trauma) never disappeared.
I asked my psychiatrist for a medication because it exhausts me. Though he says my symptoms are very mild, he agreed and prescribed me some SSRIs. so here's the problem : I'm frightened of the side effects - particularly the possibility of becoming aggressive and the weight gain. I'm afraid it'll trigger my lipedema - to the point that I can't make myself take them.
I want to call him on Monday to explain and see if some anthistaminics or betablockers would do, but if he disagrees, I really don't know what to do.
What would you think of it?
My concrete legs #Lipedema
I feel like my legs are heavy as concrete. This disease is going to take my mobility before I can even get a dr to give me a formal diagnosis. Lipedema is a rare disease, not because it’s rare really......it’s more about Dr.’s not knowing what it is, so patients aren’t being diagnosed. I have had this disease all my life, but last year was the first time I’ve ever heard the term lipedema. My sister saw it on a website, looked it up then told me “I think I know what you have!” I have gone to several doctors since and have not been given the diagnosis as of yet. How do I know I have this disease? It’s visual, there are no blood tests, yet. I look like the poster child for this disease. I am struggling with the fact that I go to doctors and they just see an obese person they don’t see the young overweight girl that I was before this disease hit me like a Mac truck. I used to walk 3 miles 4 days a week and go to the gym and lift weights 3 days a week........I have been struggling with an unknown disease for the past 4 years going to doctors, begging in tears for help and understanding, only to be told I need to lose weight. If they only knew they were giving me a nearly impossible task. 4 years ago I had no walking issues I could nearly run.....today I hobble, walking, and standing cause me pain. I use a walker or a cane wherever I go. I’m hoping to get help before this disease puts me in a wheelchair. Until then I try to maintain my pain with a keto diet, intermittent fasting, a supplement protocol by Dr Karen Herbst I found online, and using a vibration plate. Ultimately the only way to remove the lipedema fat from my legs, to gain back my mobility......I require liposuction.......that is The only way to remove the fat.
Health, Not Skinniness, Must Be Our Goal
Societal expectations on weight are not something I can afford to give much consideration. I have three “fat disorders”. If you are not familiar with fat disorders, let me give you the basics: One is Dercum’s Disease, which is very rare and out of nowhere put piles of lipomas and 60 lbs. of non calorie based fat on me in the 2000’s. The other two, #Lipedema and #Lymphedema, looking back I know that I had them growing up. We didn’t know what it was called but I always had one leg fatter than the other and was always pudgy with out of portion fat arms, legs and a huge hips. A veteran dieter by the end of third grade. Typical dieting had no impact. If I had known that, I would have been spared two years as a child eating nothing but tuna fish sandwiches. I grew up always sick because of lipedema and lymphedema. I struggled to know as a girl that my value and beauty couldn’t be based on societal expectations.
I know many of us who have had any of these conditions, because of the ignorance of the medical profession and general public, have suffered misplaced blame for what the world sees. Since learning from researchers what my misshaped, painful swollen body really is from, I have gone through a myriad of emotions. 1) Relief that it wasn’t a character flaw that I was fat. 2) Anger that for decades doctors who I trusted, knew nothing about fat disorders. They didn’t treat me with respect. 3) Gladness that I now knew what it all was and could learn to work and live with it.
The best day was years later when I could just accept my health circumstances and focus on what I could control. I started to notice I had lost the desire to eat animal products. They slid off my list menu of menu options one by one. Around the same time, I got my lab work done and my cholesterol was 300 with an LDL of 184. My blood pressure was high. With a family history of heart problems, my cardiologist put me on medication. There was far more I could do for these issues than I could do for the fat disorders.
I watched documentaries such as Forks Over Knives, read some books and pursued health through 100% low fat and glycemic plant-based eating. I have since eaten beans,whole grains, legumes, greens, root and cruciferous veggies. I really enjoy fruit too. Many in the fats disorder community are riding the KETO diet wave, and to be honest I use to do the same, but it made my cholesterol numbers ridiculous. So I listened to what my body was telling me. I took my eating to the appropriate direction.
Several weeks later, my LDL had dropped from 184 to 79! My blood pressure returned to normal. My blood sugar was greatly reduced. I also noticed that while this sort of eating didn’t cure me of the 3 fat disorders, it did greatly reduce the inflammation of my body. Between March 29, 2018 and June 3rd, 2018 besides dropping my LDL 57%, and other positive outcomes, I lost 34 pounds!
I looked at full body photos of me from before and after the weight loss. Understanding where each pound came from as I saw the swollen face and large hips in both photos, I felt pride. Never before had I felt I looked acceptable because I had always been ashamed of the realization that the world could see what I saw in the photos. This time was different. There I was at two different degrees of fat disorder pudginess and I noticed that I looked healthier now. It was an accomplishment especially under my circumstances to lose such weight. Someone on the street wouldn’t know that, but who cares? I know!
On Facebook I shared the two full body photos of myself to show the before and after. I did so with no reservation. Yay for me! I’m healthier and oh by the way, I look smaller! I was stylish when heavier and styling as someone lighter. I’m the same person in both photos.
I’m taking care of the rest of my body beyond the fat disorders and it’s greatly adding to my quality of life. At the end of the day, no one can ask for more. If I do lose enough weight to be smiled upon by those who walk by me on the street, that’s great, but my happiness isn’t dependent on that.
I am laying here hurting all over my body, I have an ##Undiagnosed Disease. I have painful tumors all over my body, specially around my joints. I am a collection of symptoms, but who knows exactly which are symptoms of the disease I suspect that I have. I believe I have Dercum’s disease, but there are only a limited amount of doctors who even know about Dercum’s and even fewer who can diagnose what type of Dercum’s I have and if #Lipedema is a part of the #Undiagnosed diseases I have.
I know how much it hurts when not only do I have extreme pain, but I also have emotional pain because I know that look in someone’s eyes that means they either don’t think I am really sick or they don’t want to know what is wrong with me. Who knows why I can’t remember things anymore, who knows why it take me an entire day and night to rest after just having a doctors appointment.
Who know how to treat my symptoms, who knows if I will be able to get out of bed, who knows why I can’t seem to get approved for Social Security #Disability. Who know when one of these tumors I have will form in a vital organs or my lungs.
I guess #Undiagnosed or underdiagnosed is leading me to loose my desire to continue to live this life, Who knows, who knows.