Hi everyone... i read these blog posts with awe and inspiration... and compassion. I try to compare my situations with others here, because clearly many of you have been dealing with ITP for some time!
I have gradually decreased my platelet count to the low numbers that scare the docs ( as mine had lost a patient due to brain hemorrhaging) but have held steady in not taking steroids. I am more afraid of them than my current illness.
I was wondering how many of you get the dizziness, brain fog, heart racing, chest pains that I get even without the steroids?
I have been faithfully seeing an acupuncturist to work on my over all body... and doing herbal medicine. which helps a tiny bit. ( the acupuncture helps with head aches and fatigue)
But as I sit here in my hotel room in Miami, getting ready to head back to LA... I am feeling melancholy because I have a high pressure job and just dont feel good.
Its been quite a while since I woke up and felt GOOD!
anyway "pity party of one" is off to LA... thanks for listening.
H
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right now 24... was down to 20 but started seeing acupuncturist again and doing his herbal medicine which addresses the bleeding. Just have some days were I want to curl up in a ball, suck my thumb and snivel.
...alas... back to work .. thanks for taking time to reach out!
Hi, I run my own business and have been in hospital many times with my laptop trying to keep everything going. The nurses got used to working around me being on my mobile when they were trying to take my blood pressure or a blood sample etc. I had my spleen removed and when I got back to the ward, within an hour, I had to phone my accountant to sort out my VAT return. As a self employed person i do not have the luxury of sick pay or sick leave. I had two employees working for me who were dependent on me for their livelihoods and paying their salaries so they could cover their bills. For me, that was pressure. Your count at 20 is high enough to have a full and active life. If it drops to nil then you have to be extra careful Not taking steroids is obviously your choice, for me steroids was something my consultant and I tried. They did not work, so we moved on, then on, then on etc until we found the right thing that has worked for me. I am on my seventh set of treatments and my condition is stable. I do still have brain fog from the treatments and the condition and am doing what I can to get rid of it. You can only do what you feel is right for you. Personally, I tried every treatment offered, and am grateful I did because now I can, for the first time in years, crack on with my business. I wish you well and if I can be of support then you have made my day. NickyD
I am a self employed consultant too. I not only support my family with two house holds - my husband had been laid off from his job of 10 years. 2 months ago he finally went to work for my biggest client and got sick himself this past week with an autoimmune disease called HSP. Currently in hospital.
I too bring iPhone and laptop to hospital. My biggest client makes motion theaters for the cinema industry and with them I not only travel regularly i have clients all over the world..Mexico, Colombia, Curaçao, Philippines, Dubai, USA and Oman (with new countries on the horizon) . I don't want them to know anything. Thank god for electronic communications . But as for my illness ... I pay our insurance out of pocket which between the $890 a month plus co pays is costing me more than my mortgage. 😩
So that is why I have a pity party but also why like you I just keep going.
I am trying to eat healthy, take my vitamins and lower my stress.( I can really tell when I am stressed. It effects me greatly. )
So yes your reply ,and your blog posts have definitely helped me. You are strong and resilient which gives me hope.
I also "get the dizziness, brain fog, heart racing, chest pains" even though II have been off steroids for some years. Honestly, I don't blame you for avoiding them. My understanding is that most insurance companies in the U.S. won't cover alternative treatments unless inexpensive ones such as steroids have proven to be ineffective or detrimental.
Our insurance bill is also more than our mortgage, even though my husband gets it through his job. And that doesn't count the two-tier ($4000/$8000) deductible. I had Rituximab a couple years ago and so far my platelets are staying above 100k. But the doctor's visits/check-ups add up quickly.
I have gotten some relief from the chest pains and heart racing with alprazolam, an anti-anxiety medication. I find I need it less and and less often, but I'm glad to know it's there for the times when I feel as if I'm having a heart attack.
The brain fog is a tremendous problem for me. I understand why some people think they've been abducted by aliens: I too experience time loss for which I can't adequately account. I'll suddenly realize that an hour or two or more have gone by without me.
I just met a few people at the Bulletproof Biohacking conference. I have been following a man named Dave Asbury for a while. He is behind the BULLETPROOF brand. I found everyone who is volunteering had some medical issue that Western medicine tried to lump into a "we ran your blood" and cant find anything.. you must be ok...( when they felt like dog poo and could barely function) to ones who had been diagnosed with some illness and wanted another solution than horrible organ ruining drugs.
I am going to avoid my hemotologist for a bit as she is insistent I do Prednisone with no other options. Clearly it isnt a one trick pony or 100% positive solution. If I get cut I realize bleeding could be my demise and that does concern me... with platelets down to 17.. I am below the mark where I said I would consider. I am following my gut.
I am also trying to decide if I should take the trip to Brazil next month... I am thinking no.. too far away and dont know anything about their medical situation. With a 12+ hour flight.. think I should sit this one out... hoping my ITP goes into remission.
but today with bruises all over me-- today aint the day!
Are you aware of the PDSA (pdsa.org)? It's like this group, but U.S.-based. there might be some useful information there on alternatives to Prednisone or how to get insurance companies to cover other meds even if you haven't tried steroids.
Hi Ruth... this is a good site- thank you. I noticed there are complimentary therapies mentioned that my docs at Kaiser frowned upon like Acupuncture! On a side note my husband was diagnosed with a virus called HSP- which is usually an illness plagued by younger children. Upon his release from hospital I noticed he tested positive for the h.pylori bacteria and is being treated for that. I am going to ask my doctor to test me as well. ITP sometimes is associated with that bacteria! ( and that bacteria is contagious)
That's good to know. I had a diagnosis for H. Pylori years ago — one of those that indicated that I had had it sometime in the past but didn't have an active infection any longer. Please let me know what your doctor finds out.
I looked up HSP. That doesn't look fun, but I gather it does usually go away eventually. But it seems as if it might be related to ITP. The plot thickens …
Sorry that you are going through such hard times. Autoimmune diseases are characterised by inflammation processes which in its turn cause feeling of fatigue and other symptoms similar to the ones we'd have fighting flu or other infections. As Nicky mentioned above, steroids are not a must and not the only line of treatment thanks to science advances. I felt awful both on steroids and without during relapses. I don't think I will allow for steroid treatment again unless it's a life defining emergency. I am in 18 month long remission to date from rituximab - this is just antibodies, like IVIG. This is my preferred choice if something happens again. Hope you find you way through it too
Watch your stress because it could greatly effect your counts. I would have to disagree with one of the comments saying you can lead a full life with counts in the 20's. Everyone is different and everybody is different. I know when mine are that low I don't feel good. And my Dr's don't want me doing anything really. So your have to listen to your body.
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Has anyone actually experienced internal bleeding?
A little depressed.
Newly Diagnosed with ITP - Are things going well?
Feeling sad
