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Give My Daughter the Shot!Participant
Hi Barbara,
Per other injuries, I’ve been warned repetitively, by multiple educated doctors (when I was in better health, able to work and earn my insurance to cover proper medical care) – DO NOT FAVOR ONE OR THE OTHER SIDE OF MY BODY – DON’T LIMP (NO MATTER WHAT) -I KEEP MY HEAD, NECK, JAW, SHOULDERS STRAIGHT (DON’T HOLD PHONE WITH SHOULDER IS ONE EXAMPLE of a warning I received many years ago). I hadn’t thought of being careful as you’d mentioned (or under circumstances with visitors) BUT am always cautious that way due to past acute injuries/dislocations.
I would say that I was sitting in a position whereas I was able to look straight ahead, almost exclusively. Like a kid sitting strictly in a school chair since there was no back where I was sitting. I kept my body symmetrically ‘straight’ but did have to hold my own head up (and was aware of this). It’s tough when one has an intense desire to be ‘normal’ as I always had been before. I’m beginning to forget but, painfully, I still remember how much I’ve lost at this point.
Your mention of the autonomic dysfunction in completely ‘on target’! My body has been doing tons and tons of outrageously illogical and terrible things to me for the past few years. I’d finally awakened, burning and sweating, in the night and when I entered all of the horrid symptoms dysautonomia popped up – describing the nightmare that I’ve been living to a ‘T’! So mentally challenging to be ‘saddled’ with something so illogical that the human brain seems incapable of even grasping it. My brain, at least, isn’t ready to accept this huge ‘load’ nor does anyone else seem to comprehend the all emcompassing level of dysfunction. I can’t even find a doctor who ‘gets it’. But, YES, my body is constantly ‘shutting down’ and subjecting me to horrible, random dysfunctional troubles.
Do you know of any way of ‘fixing’ ANYTHING that will actually give me MORE FUNCTION versus having to succumb to low level functioning??
Thank you so much for your response. I will read and re-read. I need to re-train my brain to understand what is going on with my body because I am constantly ‘at odds’ with myself – which I am certain is using energy!
Give My Daughter the Shot!ParticipantToday I went to the clinic again. Because something,maybe the Ehlers Danlos, has rendered me so incapacitated I am unable to earn (not only money but INSURANCE). Today, the clinic doctor told me that my connective tissue is in remission. He also told me that the bug bite was normal. It happened on May 11 so tomorrow will be 6 weeks old. He said that triple antibiotic was making it worse (which seems a little conflictive of it being normal) and do not use it. I mentioned that the doctor whom I saw 5 weeks ago (when it was a pressurized blister that could not be drained) said that I was immunosuppressed and that it would take awhile. He emphatically told me that I am not immunosuppressed! He said to rub cortisone into it aggressively. HE REFUSED TO WOUND CULTURE IT. Offered 7 days doxycycline. Should I take meds before culturing? Any suggestions?
Also, the curvularia wound culture on my elbow still bears a scar (after being a nightmare to contend with). Sometimes the scar (which I think may be a cigarette paper scar) burns/itches/stings like crap and when I look at it, it is in the process of developing a lump. I watch the lump grow as it continues to burn and hurt. What the heck is causing this? Now, I again ask if I should be treating wounds without culturing them?
I also have complications from infections such as strep. I’ve also been told that nobody knows why I have an unusually high strep concentration in my blood. Macrocytosis (large red blood cells), low folate. My hypothyroidism is always very erratic and I’m accused of drinking a glass of milk.
As if it weren’t bad enough already.
Give My Daughter the Shot!ParticipantI have EDS. Dysautonomia, undiagnosed but strongly suspected by me (the one who lives within the ‘shell’). CFS was suggested by my genetic doctor as well as his confirmation that my formally diagnosed on paper: fibromyalgia and neuropathy are common in EDS. So is IBS. Essentially, my EDS ‘umbrella-ed’ many of my previous diagnoses.
My echo:
1. Mild diastolic relaxation impairment
2. Global hypokinesis
3. LV function is severely depressed, ejection fraction 25-29%
4. RV systolic pressure 10mmHg (whatever that means, probably normal)
5. Mild mitral regurgitation
6. Mild tricuspid regurgitationThen thoracic MRI, prescribed by cardiologist raised my EF as high as 52%.
Holter monitor showed: random arrythmias, tachycardia, brachycardia. I was told that my heart is stable and results weren’t reviewed with me. My genetic doctor says that regardless of whether or not my heart is stable, I still have cardiomyopathy as well as regurgitations – and something is wrong with my heart. So many other problems that I’m basically ‘chasing my tail’ and not focused on my heart anymore. No, I do not want CHF! Life is, by far, difficult enough. My grandfather had acute CHF and it was really tough. I suffer chronic suffocating exhaustion that cannot be remediated by any means and, for a time, was labeled as having CHF. At this point, I am not sure.
Are these heart problems related to EDS? Just thought I’d compare notes. Oh, strangely, I had to track down my echo weeks after it was performed and figure out the results myself – others have mentioned this. Doesn’t this seem odd? I was appalled because the word ‘severely’ was contained in my echo and nobody bothered to mention anything about it. Odd, very odd.
Give My Daughter the Shot!ParticipantI have EDS. Dysautonomia, undiagnosed but strongly suspected by me (the one who lives within the ‘shell’). My echo:
1. Mild diastolic relaxation impairment
2. Global hypokinesis
3. LV function is severely depressed, ejection fraction 25-29%
4. RV systolic pressure 10mmHg (whatever that means, probably normal)
5. Mild mitral regurgitation
6. Mild tricuspid regurgitationThen thoracic MRI, prescribed by cardiologist raised my EF as high as 52%.
Holter monitor showed: random arrythmias, tachycardia, brachycardia. I was told that my heart is stable and results weren’t reviewed with me. My genetic doctor says that regardless of whether or not my heart is stable, I still have cardiomyopathy as well as regurgitations. So many other problems that I’m basically ‘chasing my tail’.
Are these heart problems related to EDS? Anyway, I guess this is diff from left axis deviation? Just thought I’d compare notes. 🙂
Give My Daughter the Shot!ParticipantYou are so awesome! Thank you! So, you see the granular or lumpiness – great. This could actually be poor wound healing? Seems crazy to me! Does the level of immunosuppression commensurate with the vastly extended time and struggle to heal?
Yes, I agree 100% about a wound culture!!! I probably need to make sure I have having things cultured like never before. I’m having complications from EVERYTHING! I may not be adjusted to having problems healing but the issues are so intense and so disturbing. Nobody knows what on earth is going on, least of all me. All I know is that there is a problem. I knew this thing ‘wasn’t right’.
To boot, I have a mini cut (little larger than a papercut) on my thumb. Traumatic. It’s tough to go from not a very big deal to trauma at the smallest things. I can’t acclimate myself to what my health has become. So many problems and my focus is disastrous too!
Anyway, I am so appreciative. Thank you for your response. Any websites would be appreciated and I have gotten another rave review about the private practice doctor from whom I would potentially like to seek help. I’ll be able to take what you said and include it in my line of questions. 🙂
Give My Daughter the Shot!ParticipantFine, if things take forever to heal. God help me to avoid something as simple as a papercut – and I mean that in all seriousness. As for this injury, it’s worse than delayed healing, it seems to have mutated into something worse than it was. It is larger within the past week or two versus remaining stable or shrinking in size. I just can’t imagine that is normal. Granted, I haven’t had these health problems throughout my life and I find it difficult to ‘wrap my brain around’ being immunosuppressed. I’ve only had seriously notable healing issues over the past handful of years. I’m no expert on immunosuppression and I wish I would never have to be. This ‘bite’ just doesn’t make sense to me.
If you could provide me with possible information so that I might have something to present, along with myself when I re-enter the clinic to beg and grovel again for medical care. Please advise. Thank you, in advance, for your assistance with regards to this matter.
Give My Daughter the Shot!ParticipantHi Diana,
Ok, I’m not having constipation but the polar opposite at this time. I don’t weigh enough to have diarrhea so badly that I can’t control it. Also, I can’t leave the house if I have to fear having an accident. We missed Easter festivities due to pants pooping, on my part and not the part of my youngsters. Gross, I know – I really know. I was diagnosed about 20 years ago with IBS -irritable BOWEL! – no thanks. I blew that one right off (no pun intended). No successful, cute, happy, outgoing young person (of dating age) wants any sort of bowel issue – believe you me! When it would flare, over the years, I would discreetly search the internet for suggestions on how to improve the issues at hand via diet, etc. It wasn’t something that I would have considered to be anything more than an inconvenience nor was it anything that I wanted to have in the first place – meaning I would have avoided giving it any consideration at all if remotely possible.
I was more-or-less ‘fine’ 6 or 8 years ago, well maybe 10.
Fast forward to now: I’m trapped on the potty often and it certainly affects my abilities (not that I have many abilities anyway). I sure don’t need this problem since I’m ‘bogged down’ beyond comprehension. Now, a step further into having to worry if/when I’m going to poop my pants?! This has started over the past few months and has not been everyday (except the last few). It’s random too. I think I am in so much pain, nausea, suffocating exhaustion all day everyday that I can’t even tell if I am sick much less in some additional pain or having more problems. If I was at 10% of my normal function, this problem has got to cut that number in half. You’ve gotta be kidding! Ugh, what a life?!
Sorry for the ‘gore’. I am bloated also as well as having a lot of cramping. While you mentioned constipation as a primary, you’d also referenced diarrhea. Any suggestions for my current issue at hand? Please help me if you can. I’ve lost enough already and I don’t need to add this problem to my ‘stock pile’. I just want it to go away.
Thanks, Diana.
Give My Daughter the Shot!ParticipantHi Barbara,
Thanks so much for taking the time to reply. I’m so overrun by disabilities (EDS for one) and it’s been so emotionally and psychologically traumatic (of course, not to mention physically) for me that I almost always feel as though I don’t know my head from my behind. Dreadful! I’m so needy and under-educated about the complexities and dumbfounding magnitude of my rapidly declining health that I would not have imagined that I could possibly have made a diff to anyone else. I appreciate you saying what you did. It wasn’t so long ago when I was uber independent and had a life that I truly enjoyed and was quite content with – boy, am I in stark contrast to that now. Ultimately, I think that I’ll be able to ‘survive/thrive’, in whatever way my body will allow, once I am able to figure out a way to be a helpful/meaningful/competent person in whatever way God sees fit. Of course, I’ve also got the daunting task of figuring out how (my personal concoction) to manage/maintain my already ridiculously low level of physical function. Thank you, again, for letting me know about the potentially helpful info in my post. Means a LOT to me right now. God Bless.
Give My Daughter the Shot!ParticipantI understand that it is possible to have both Marfans and EDS. This was explained to my by someone having ties to Hal Deitz, Clair Francomano, etc. I would deem the source from which I heard this to be reliable. I am unable to provide specific details unless I were to ask again and meticulously document what is told to me.
Give My Daughter the Shot!Participanthttp://www.turnto23.com/health/31122357/detail.html . Here is another ‘spin-off’ of the article to which you refer, Diana. No responses on this one. CNN really ‘gets around’. Ugh!
http://www.thedenverchannel.com/health/31122357/detail.html
Anyway, if you google CNN and Ehlers Danlos – you get pages and pages of the initial article that you posted, Diana. It appears that every newspaper (at least published online – I have no idea about the paper copies) in the country has ‘caught on to’ this article. It’s clearly been released by TONS & TONS of local newschannels throughout the US have picked up CNNs article and re-printed and circulated it throughout their local communities.
Good luck to those who are seeking much needed medical help for Ehlers Danlos. Ugh! Go buy some acetaminophin and hope it doesn’t rip up the GI tract, I guess – at least according to the doctor they interviewed. I’m sure we all know how much good this doctor’s advice is.
There should be legal accountability (in my opinion) since many of the statements were blatant falsehoods. There should be a retraction, no question (imo).
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