Forum Replies Created
-
AuthorPosts
-
Give My Daughter the Shot!Participant
http://www.whitneyzone.com/wz/ubbthreads.php/topics/6444/Re_Diamox_Acetazolamide_for_ac
I am allergic to sulfa (had pretty bad hives from bactrim years ago) or, at least, assume that I am since it was a pretty intense and widespread reaction. Does this mean that I cannot take Diamox? I found the above link that says that it’s sorta diff from sulfa. Any final verdicts? Would it be dangerous to try it? I don’t need anymore trouble, trust me!
July 18, 2012 at 6:40 pm in reply to: DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR #2638Give My Daughter the Shot!ParticipantCardionet was the company who issued my Holter Moniter. I received my detailed results directly from them. I faxed a request/release and they Fed Ex my entire ‘file’ directly to my home. I’ve just filed the results since I don’t know how to read them. Brachycardia, tachycardia, arrythmia, etc – it’s all there. My cardiologist said my heart was stable though. After a terrible echo, I wondered about this. I thought maybe they thought I was active like a normal person which caused the fluctuations. I am probably 10% of what I was, and at random (meaning that I can’t even effectively utilize the 10% that’s left) so I never know when I might have the clarity, energy, willing body to perform my will. It’s never nearly up to par but when I am not feeling like death warmed over, I practically ‘short circuit’ with my brain going nuts with the buzzillion things that I am unable to do – every item jockeying for position so that it might be able to finally be worked on. Sometimes I think I will have a good day and the ‘short circuit’ kicks in. I try to remain calm and conserve the energy of the good day that I anticipate. It always dissapates after a few hours and I’ve never actually gotten the day that I’d hoped for or become so excited about. Anyway, I digress. I’m just very stressed wishing things that I desperately wanted/needed to do were done – very stressed about it.
I’m going to be stumbling and staggering in an anxious fog to perform this ‘exciting’ task. I think my adult son will have to help me to figure it out.
Anyway, I’ve sorta forgotten where I was going but a main point was to suggest you contact the company who provided the Holter Monitor. My monitor was mailed to my home directly by the company. I’m not sure if that made me a client of theirs or if I am just legally entitled to receive my records upon request with proper paperwork. It was really easy though and I never thought too much about it. Figured my doctor might lose it – and I did wait 3 hours for them to find what I already had in my notebook. Ugh!
God bless and thank you for this post. I hope I will be able to find help within it.
BTW, anyone know of testing for dysautonomia. I’m pretty sure I’ll get a tilt table test but I am not convinced that my POTS reactions are completely regular – they may be – they may not. I just don’t know. Any suggestions? Or do you think I can do something like mentioned and take it to my cardiologist. My cardiologist should be an excellent doctor. I’m not sure he does much with EDS but he is so well educated. If I could figure out what to tell him or what to ask for, I do think he would help me.
I guess, for starters, I could ask him about Diamox?
Thoughts? Suggestions?
Give My Daughter the Shot!ParticipantHi Ang,
I am in your same boat. Every day is like the flu for me. I don’t have it figured out yet but wanted to send some support.
July 16, 2012 at 11:03 pm in reply to: Nailing down my diagnoses – finally making progress after 13 long years! #2627Give My Daughter the Shot!ParticipantHi Martiz,
Now I am struggling with major exhaustion. RSD is reflex sympathetic dystrophy syndrome. It’s a chronic pain syndrome. I spoke with the office a little over a year ago and it was thought that, over these past 8 years, I have likely gone from fibro to RSD. Sorry if I transposed letters before.
Ugh! I do have appt w/ specialist (endocrinologist assistant) tomorrow and am not prepared. I’m so tired. They’ll probably pat me on the head, tell me it was nice to see me, and I’ll be exhausted out of my mind and have to rest for a good while before I can head home. The person I’m seeing is so darling and well-meaning too. Sad, really. I was hoping for suggestions about this appt but won’t have time to see what anyone says.
Thank you for mentioning cardiologist familiar w/EDS. Mine is supposed to be familiar w/genetic disorders and the heart. Probably genetic heart disorders, really. I really think he is wonderful too. I love his nurse and staff is very good. Still, my care is so fragmented and nobody understands. He did put me on Losartan (which is supposed to be good for improvement of smooth muscle….. blah blah, don’t really get it). I know Losartan has been used in Marfan studies.
Meanwhile, I just flounder.
You’re right about the Lyrica. I’m not sure how much it helps but am sorta scared to stop taking it. It was rx for fibromyalgia. I want to check into what you said though. Hmmm. I don’t even think I have endorphins anymore. Awful. Maybe because I’m so weakened/wiped out all the time or the pain or nausea and GI struggles.
My fingers and tips are hurting. I’m tired and not thinking straight. Ido want to talk to you more. Thank you.
July 16, 2012 at 9:15 am in reply to: Nailing down my diagnoses – finally making progress after 13 long years! #2623Give My Daughter the Shot!ParticipantThanks, Marti. I completely understand and can soooooooo relate! Look forward to hearing from you. 🙂
July 15, 2012 at 4:48 pm in reply to: Nailing down my diagnoses – finally making progress after 13 long years! #2620Give My Daughter the Shot!ParticipantHi Martiz,
Thank you so much. I don’t have more experience than you, for starters. I’m in an awful struggle here and, while I’ve had my share of suffering for awhile now, was only diagnosed with EDS about a year ago.
Fibromyalgia, along with the explanation that there was a likelihood that it could (over time) progress to RSD was reviewed with me nearly 10 years ago by a highly decorated, award winning, Harvard and Vanderbilt doctor with numerous degrees and licenses in multiple states. This was during an acute injury/dislocation which required an obscene amount of EVERYTHING IMAGINABLE being invested into its rather extreme surgical repair and post-op dedication.
Back in those days, my insanely strong will coupled with my identity as a vibrant and healthy person made me immediately deflect and refuse the notion. I simply took a ‘no thank you’ approach and said that I’d be fine. I wanted to have a successful surgery and ‘just move on’. It had been such an impossible rare and all-invasive injury/dislocation that I’d already been traumatized and isolated enough. I’d done all that I could, my conscience was clear, I’d gone to the best and promptly taken care of my issue. What more…. I’d done EVERYTHING in the best way possible and I KNEW THAT I HAD!
In hindsight, no matter how determined I had remained over these past many years to deflect the snowballing health problems I endure, everything had begun to take its toll on me. I’m enduring these diagnoses and their illogical multitudes of dreadful symptoms. It’s like a little baby lamb fighting a ferocious and insidious wolf. My waif-like and acutely weakened, frame under perpetual attack by such wicked symptoms, is certainly no worthy adversary for such cunning physiological dysfunction.
Ta-da.org . I just ran across that site. I’m beginning to wonder if TX might be my closest option for appropriate medical care. Five hours. Daunting when an hour can be too much. Dr. Grubb is in Ohio and would be 12 hours. I’m even desperate enough to offer myself for what I used to think was experimentation that was only submitted to by whinos and druggies (and I even thought that should be illegal). I’m speaking of the human research. It would, more than likely, far surpass the care that I am receiving and probably be well worth it. My quality of care has turned by 180 degrees due to having to move. I could’ve never been prepared for the tremendous disparity of quality of medical care within the United States. It’s shocking to say the very least, very sad. I was aware of differing valuation of humanity by various cultures, however, never could have known that it would exist to this extent within the US. Pretty painful, to say the least.
My goal is ‘first, do no harm’ for the doctors and then I, personally, just want more function. I think that, since I seem to have a high tolerance for pain, a can handle some pain if I can only have some function restored. The nausea, diarrhea, vomiting, sweating, etc is also capable of a ‘shut down’ for me though. Exhaustion is staggering (literally, at times). I thought that was occurring as a possible result of my body’s reaction to pain. I’ve had 3 kids and none with any anesthesia – I know pain and am strong willed enough to handle it. Now, the long term nature of my pain by this time is probably another story. Narcotics make me sick as a dog and I fear they would cost me more function so I’ve used alternatives such as Lyrica. Sorta ‘chicken or the egg’ and not sure how to organize, set goals and accomplish maintenance – especially being so physicially defective and having virtually no medical assistance.
I have ‘windows’ where I am functional enough to be able to research and advocate for myself a little. Consistency and efficacy eludes me though.
My genetic doctor was explaining to me that he would prioritize the networking of specialists within his medical system to cope with the global effects of connective tissue disorder. Maybe I should ‘lean’ on him and his office harder. It’s just that I NEED the help NOW! I don’t want to wait, however long, for attempts to orchestrate a network of doctors who ‘get it’ and will be working harmoniously to provide care.
Truthfully, even if there were ONE single comprehensive health building or medical center to house EDS/Marfans/connective tissue disorder specialists – that would be a HUGE VICTORY!!! I don’t feel good enough AND my body simply will not cooperate with my will. The struggle for proper treatment is relatively futile. If anyone needs one stop shopping, it’s us! Heck, put all of the EXPERTS in one building; genetic, orthopedic, cardiologist, endocrinologist, neurologist, rheumatologist, opthamologist, pain management, etc etc etc. Probably a warm weather state would be a good idea to prevent infringement of inclement weather. I wouldn’t be surprised if they didn’t draw from all over the country. Don’t forbid non-connective tissue disorder patients either just make sure the specialists have a thorough understanding connective tissue disorder. Add a research and development department. That would really be ‘the be all end all’! The patient would just have to get a hotel room for a week. Then struggle to find local care once back home BUT with renowned expert information in hand, at least the local GP couldn’t call us a liar. We could also gather recommendations for treatment plan. Return annually or biannually for follow up and treatment plan adjustments, as needed. I mean, they do have specialty facilities for cancer and the like….
I am unaware of a more all-consuming health crisis than the conglomeration of what we’re going though – multisystemic devastation. Of course, I don’t have the energy to do the research to confirm that. I’m just pretty blown away by what I experience.
I’m tired and thinking out loud. Yes, help me if you can. I would welcome any suggestions with open arms.
July 14, 2012 at 2:49 pm in reply to: Nailing down my diagnoses – finally making progress after 13 long years! #2612Give My Daughter the Shot!ParticipantIs Dr. Suleman the doctor who ‘tied this all together’ and diagnosed you?
My genetic doctor made recommendations for several specialists who were supposed to manage the various body systems: cardiologist, orthopedic, etc etc etc. My problem has been that the specialists don’t know what EDS is. Complete disconnect!
Who diasnosed you?
It sounds like they understand the comorbid, multisystemic dysfunction. I’m left with shards here.
I think if my skeleton was a bit ‘off’ outside of the scheme of things it might not be such a big deal but I can’t help but suspect that the ‘off’ issues are fragments of a more global picture.
Example: had my genetic doctor been able to (and I don’t fault him, believe me) diagnose me with POTS, then my cardiologist would have been off to a ‘running start’ as far as treating me.
Many specialists are not thinking ‘outside the box’ in my opinion and, since there’s nothing ‘textbook’ about what I’m enduring, I’m not making sense to them. Basically, there is not a bonafide reason (from their expertise, since they don’t understand EDS) why I should feel THIS BAD! But I am stuck feeling THIS BAD AND BEYOND! Every day!
Thanks for posting something that gives some hope.
July 14, 2012 at 9:53 am in reply to: DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR #2609Give My Daughter the Shot!ParticipantI was diagnosed with EDS a little over a year ago. As a result of suspicion of Marfans, an echo was ordered.
I would have had zero idea that I could ever have any heart issues. I’ve always been skinny and just assumed, after being praised for being the epitomy of perfect health with my chronic low blood pressure, low body temp, and slight build. Actually, slight is an understatement, I’ve spent my life enduring suspicion of anorexia and/or bulemia – very irritating!
Anyway, I never attributed my inability to stand to my heart. While I noticed chest pain and severe shortness of breath, I never would have thought anything of it since I didn’t fit the profile for heart problems.
When I couldn’t get myself to the kitchen or to the bathroom, I assumed there was some other culprit. I would’ve suspected systemic poisoning before heart problems. Seriously!
As it stands, I do feel certain of the dysautonomia and I also know that my illogically erratic heart rate is part of the dysautonomia. I’m sorta in a situation like; “Who am I gonna tell?”. Who is going to give a crap or understand that?! I don’t have the desire to endure the abuse while I beg for understanding. I’ll just have to remain severely dysfunctional while the doctors all call me lazy or an exaggerator or someone who is thinking about bad things and bringing this onto myself. Or, ‘well, your bloodwork is normal’ – ‘Nah Nah Nuh Nah Nah!’ – ‘That’s right – in your face – your bloodwork is normal’. Years of that type of treatment has really taken its toll on me.
I think, for the dysautonomia, I’d have to see a specialist who is informed about it. I’m not sure I have the ‘fight’/energy/umph/reserves to seek help otherwise. I do thank you for your post and it may be worth trying what you have. It’s a huge challenge to figure out how to be so profoundly resourceful with multi-systemic dysfunction. Sadly, this is just the autonomic dysfunction portion.
Then there’s the GI, the CFS, the migraines, acute injuries/dislocations, the insane pressure in jaw and head – and TONS more. Many problems I am not even sure which systemic function for which to categorize. Like, does the pressure in jaw and head go with TMJD, hypothyroid, or now CCSVI. Never knowing where to start to achieve the coveted ‘slow the degenerative process’. THEN, TO HAVE TO FIGURE IT ALL OUT WHILE LIVING IT with the exhausted brain. It’s beyond insane. It’s really not cool!
You’re an inspiration to us all with your resourcefulness. God bless your little (well grown up cool kid now) boy for having a mom who would go to those lengths for him. Nobody on the face of this earth would do anything like that for me. My life knows only dependents so I am spread quite thin. <--- Not a sob story, just the simple facts. I will say that I am sick and tired of having the medically impossible happen to me and lacking comprehension of a suitable doctor. That does bother me a lot and has for many years now. It's been a really rough road. Prior to this 'road', I could go to the doctor for asthma, sinus infections, bronchitis or a UTI, be Rx an antibiotic, take it, and be just fine (with only a few exceptions). I never allowed the 'exceptions' to be an issue (assumed they were all well within normal limits) and didn't give much thought until now. Now, I have to consider that they are more likely to fit into a larger picture of a connective tissue disorder. Thanks, again, for your post. That may, potentially, be much needed help for me (hope others might benefit as well). During a time when I can focus, I will comprise and hopefully be able to use some of this info to begin to secure proper treatment. Every little bit helps (or so I hope and pray). Mind numbing to feel this horrid and have to work this hard - when it's impossible to work this hard when you feel so bad. Can you say, catch 22. 🙂
Give My Daughter the Shot!ParticipantOk, when I first saw the heading on this one, I thought my nails hadn’t had any major notable changes. They don’t hurt and, in the scheme of things, are the least of my worries – quite frankly. They are ridged vertically. They are also relatively flat. Hmmm. I never thought much about it. I’ve had white spots but only from time to time and I’d just began to drink more milk since I assumed (or may have been told) that it was a calcium thing causing spots. I would’ve never thought of them being flat or ridged as being an issue or having much meaning. Some of the nails are ridged enough to be weird, probably. Actually, the very obvious ridging is likely a change, though I am not sure when it began or how long it has taken to become so pronounced.
Give My Daughter the Shot!ParticipantI never looked at the ‘weird changes in nails’ post because I didn’t think I had any weird changes to speak of – especially in the scheme of things. I, too, have vertical ridges on my nails. How weird. At least the vertical ridges don’t hurt. Of course I wouldn’t have noticed that. LOL! I will look at that post now and chime in if applicable.
I wouldn’t know what toxins to test for. I need to prepare very specific diagnostic requests with great strategic precision. I am PTSD over needles and have to group my bloodwork.
I need to group other diagnostics, thoughtfully and carefully, so that I can be as effective and efficient as possible.
It’s tough to do this without any formal medical training. Especially, when I feel so horrific every day. There’s another part of me that still doesn’t want to believe this has happened to me. It’s a ‘tall order’ for me to figure out how to orchestrate all of this – especially without supportive doctors. That part is very hurtful. My genetic doctor told me that I would have to educate my doctors and I bawled and bawled at the notion of returning to the ‘scene of the crime’ where I had been so dreadfully mistreated. It seems absurd to think that I would have the energy to break through the trauma that has been inflicted onto me with my meticulously/carefully/thoughtfully/educated/thorough/captivating/sensible sales presentation for which tests I require and why. Then, if I’m able to get the diagnostics – I’ll have to figure out how to ‘read’ them myself. Then present results back to doctor who probably misread them in the first place. Seems pretty insane to me. Plus, I’m not feeling so good. I mean, if I could do all of that – I’d be at work and living the life for which I am accustomed to – not being poor, sick, and miserable.
Thank you, again, for your info. When God gives me the strength to do so, I will review everything and begin to make sensible order of it so that I can take it to my doctor. I just have to get myself psyched and be strong. Worst part, IF I were able to get myself psyched – it wouldn’t be ‘on cue’ but random. There is no telling if I’d be ‘on my game’ at the point my doctor enters the exam room. If I randomly flounder and brain fog – it’s potentially a wasted appointment. Know what I mean. I really need to ‘hold my own’ or the doctor senses weakness and pounces. In this case I hear things like; I’m depressed, it’s in my head, get on with my life, my bloodwork is fine and no reason I should be acting this way, etc. So so much has to align for me to accomplish anything at all, it seems. I truly hate that! At the mercy of a body that randomly and severely betrays me. My doctors appointments now are like going into battle. I’ve never had that before.
I’ve thought that I’d be better off preparing a wrongful death suit versus trying to acquire treatment. It would be a better use of my very limited resources. I don’t mean that in a pity way but more in a DOCUMENT EVERY LOUSY THING sort of way. You want to neglect me, I’ll document it. You want to insult and mistreat me, I’ll document it. ETc. I detest what I am going through and hate to know that other people feeling this bad are going through the same thing.
Anyway, if you do come up with relevant toxicology testing, let me know and I’ll see if there is any chance I can find a way to present, justify, and acquire the test. I’ve wondered about mould since I had been exposed a few years ago. What toxicology are you thinking? Candida?
July 13, 2012 at 7:25 pm in reply to: DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR #2597Give My Daughter the Shot!ParticipantYou should just gather ALL of those records and take them somewhere else. Many ER doctors are salaried with their local hospital for a reason (IMO), they aren’t suited for successful private practice.
I’ve had upper hot and lower cold. Veins bulging above waist and retracted on lower freezing half. Insane, right!
I’ve never had either side being diff like that.
I wouldn’t dare go to the local ER where I’m at now as I truly believe they could be negligent or incompetent enough to cause serious harm to me. I have, however, gone to bed at night wondering whether or not I would wake in the morning. Sorta like the couple of times, long ago, when I drove tired at night from a trip and thought that I’d rather wreck and have the police present versus pulling over to sleep and risk being raped and mugged. Yes, I know it’s wrong to ‘drive tired’ but I was very young. Risking death in my sleep seems to me to be the lesser of the two evils – as bad as that sounds.
Now, everyday is sorta like those couple of extreme times of driving tired and that one exhausted time in High School when I almost fell right off my chair due to inability to remain upright due to profound exhaustion. So weird, huh.
There’s not much use looking for medical help if I’m not going to receive any. I can feel good about my physical therapy (since exercise is good for nearly every ailment). My PT has helped me out with frozen shoulder and has given me basic info that I’ll remember just cuz she said it during such a critical time. She says, “We were designed to move” and need to make sure our bodies move, at least a little, to prevent further injury – such as frozen shoulder, etc. At least that is something that I can feel proactive about. Once per week for 30 min. Even if I’m not furthering my abilities, I should be maintaining – which my genetic doctor said is the goal – slow the degenerative process of EDS.
I try to make any positive medical provisions that I possibly can. I’m just so limited.
Anyway, if you gathered your records and took them to a specialist, I’ll bet you’d get a heck of a lot of answers.
July 13, 2012 at 5:49 pm in reply to: DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR #2592Give My Daughter the Shot!ParticipantHi, I’ve had some similar experiences.
My echo said that I was nearly dead and several doctors told me not to be scared when they implant a pacemaker. Many heart problems.
My thoracic MRI, where I was so terrified that I’m lucky that my heart didn’t burst – brought my EF up and the echo was now ‘old news’.
My holter monitor showed, arrythmia, brachycardia, and tachycardia which they didn’t seem concerned about. I was thinking that they don’t realize that a few steps to the bathroom can send my heart into a frenzy. Maybe they thought I was exercising to create the tachycardia. I just dropped the subject. I don’t have the energy to advocate for myself with someone who is ‘blind’.
I was told that the echo didn’t take into account my chest deformity due to the EDS. That’s why the results varied. I was also told that my heart is now stable.
My genetic doctor said that it was fine if my heart was stable but I have cardiomyopathy as well as other heart problems. He said that I should know why my heart is damaged, what the cause is, or something-or-other about my heart is not a non-issue. He felt my heart was, indeed, an issue.
Who am I gonna tell this to????
According to me, I have dysautonomia. I am not 100% positive of POTS because I am not positive of the consistency of my heart rate. Yes, it goes up 30bpm when I stand BUT I’m not positive that it does exactly this every single time. It goes crazy for no reason. I feel wave of cold over me and it drops significantly. I can sit still and it changes up on me. My body doesn’t seem stable enough to me for me to be sure of POTS. I burn. I sweat. I freeze. ALL RANDOMLY AND WITHOUT ANY PROVOCATION WHATSOEVER. Vomit. Nausea. Diarrhea. My body is just haywire! It’s all over the place. Now, let me try telling a doctor that I have dysautonomia. Yeah, right.
I do want to say this: Blair Grubb and his PA, Beverly Karabin are familiar with dysautonomia. They are out of Toledo, OH. I haven’t been as of yet but I’m sure it would be worth it.
I think he might be POTS expert also. I’m sure that going to him would be better than spending years ‘chasing your tail’ and being abused by multiple doctors. RIP THE BAND-AID OFF! LOL! We can get it right the first time, God willing. I think it would be a lot better for our health and quality of life.
Here’s a thought: what if the echo and thoracic MRI results were so diff because my heart and my body are insanely out of sync?! Hmmm! Hmmm! The variance is off the charts, really. I’ll bet if I had an echo every day, it would be quite diff – or maybe once per week. My days seem to go in ‘clusters’ ie: headache for 5 days, pants crapping for 4 days, can’t stay awake past 7pm for a handful of days, too exhausted to barely move for 3 days, blah blah, yadda yadda – just the tip of the iceberg. Might get a few relatively consistent days of a certain suffering, who knows? Then the next ‘wave’ comes in stronger and shifts focus onto it. Lucky me, huh?
Sorry for what you’re going through. I’d say an expert who would actually help would be the best course of action.
Give My Daughter the Shot!ParticipantHi Barbara,
I, too, kept telling myself that I would ‘ramp up’, I would ‘ramp up’ while doing an hour a day, few times per week Bible study, library, or church, volunteering. Could not figure out what on earth could possibly be wrong due to it all being way too illogical. Tried the ‘delusional way out’ but, no matter how much I tried to pretend, I could not function. No matter how much I told myself in an internal fakey cheery voice, ‘Oh, that’s ok’ about the staggering deficiencies I was experiencing. No matter how much I tried to not worry about it and it would go away – NONE OF IT WORKED!!!
Yes, I understand CFS. I suffered from it for a long time while doctors acted like I was a liar and told me I was making myself depressed by thinking about something bad. What a load of horse ….! My body was, randomly, shutting down and failing me in a vast assortment of ways, every single day. That is what alarmed me so much – I WAS NOT thinking about anything sad or bad. It was just happening. Now, that’s pretty scary – I don’t care who you are or how stoic! My genetic doctor told me, in a non-insulting ‘duh’ sort of way that chronic fatigue is part of EDS.
Like you describe, I couldn’t figure out why I wasn’t ‘ramping up’. Who can’t ‘ramp up’ from 4-5 sedentary hours per week?! In single hour intervals!? You’ve gotta be kidding! That just seems impossible and is completely illogical! Logically, one would be able to ‘build off of’ the base and enhance; add an additional hour, add another day, SOMETHING!! ANYTHING!!
Thank you for your feedback. I need concrete proof for these %^%$^%$% doctors. So sick of it. I hate having to be this proactive. If I can only wring 4-5 hours out of myself, I for …. sure don’t want to spend it as an advocate for my own health. I always thought that is what doctors were for. I’m not a doctor and I surely don’t get paid like a doctor – heck, I don’t even get paid like an earner – since my body won’t allow me to work/earn. I don’t want to be a doctor, I just want to be myself and learn to accept some of this mess that I can’t ‘blow off’. Sorry, can you tell that someone feels a little frustrated. Anyway, I think I’m also going to try to match my bloodwork results with the ones you mention. They’ve not been reviewed with me so I have no idea of what the significance of highs and lows are. Maybe I can post the test abbreviations and someone can tell me what they mean (or what they think they might mean, since it’s not their job to review my labs with me nor should it be their liability). Also, my tell-tale skeletal deformities, etc – are being seen as more benign rather than a sign of something more global. I know, from living in my skin, how badly I hurt and how dysfunctional my body is. I AM POSITIVE THAT TESTS WOULD SHOW THIS! I don’t believe that the highs and lows are no biggie. I don’t believe that having a massive knot of bones that hurts like crap and prevents me from lying on my back (sometimes hurts to sit) is normal. I actually think it might be pinching nerves because I’m having some pretty major leg problems (I think circulatory also). It really gets old.
I went through a stage of thinking I had the type of AIDS that existed in the 1980s (but knowing that I couldn’t have acquired it). I went through a stage of thinking that I must be systemically poisoned. My whole body is a disaster area. Sick part is that, throughout my life, if I’ve said that something is wrong – it’s been ‘ALL OF THAT AND A BIG BAG OF CHIPS TOO’. I’ve never exaggerated anything medical and it’s always been significantly worse than I’ve stated – as PROVEN by DIAGNOSTICS!!!! Where’s that life?? Where are my diagnostics?? Where’s my proper course of treatment?? Where’s my knowledgeable physician??
It’s like all of the diff doctors just want me to be positive and don’t worry. What they don’t realize is that they aren’t collaborating with one another. They don’t realize the global affect of my health situation. I can’t sound crazy so I have to choose one thing to talk about – what a joke! That’s actually the policy too – pick one thing! Seriously! They sometimes act as though if they pat me on the head and cheer me, it will disappear. Don’t they know that I’ve already tried that – for over a year!!! I didn’t try for help until my own, incredibly strong, personal will to be ‘just fine’ had been completely exhausted!! More than anyone else in the whole world, I want to be positive and don’t worry!!!! When a person’s body is blowing up in their face every day for years, it just isn’t that way anymore. As you said, Barbara, it affects everything: social interactions, ability to go outdoors, ability to stand/think/sit, PLAN, set goals, accomplish basic tasks, self-esteem, identity, earn a living, and EVERYTHING ELSE you could possibly imagine!! There aren’t even words to describe it.
I have a bit of a tough time calling it fatigue because the general population believes they can relate to it and thinks, ‘well, take a nap’ or ‘get some rest’. I have to call it weakness (though that doesn’t describe it either). Exhaustion, however, people think that after a good night’s sleep it resolves. It shouldn’t be described by a mainstream word. There is no escape, no relief, no end… It’s a trap that makes no sense. It’s as if I haven’t slept in years. I realize how incomprehensible that is. I am fully aware of how illogical it is. I, myself, am dumbfounded by what I experience. I can’t believe it myself – and, yet, I am trapped in it – every day! Crazy, right?!
Thank you so much for posting, Barbara!
Give My Daughter the Shot!ParticipantThanks for that. I, too, see variations (even between myself and my affected children). My mother and siblings. My maternal grandmother and siblings.
Question: If I am hypermobility type, could my mother have had vascular?? Do all generations have exact same type as diasnosis?
July 6, 2012 at 8:44 am in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #2546Give My Daughter the Shot!ParticipantWhere do I start with that one. I, basically, thought it was normal and that everyone had it. I also dated someone who ‘confirmed’ for me that people who are tall just have back pain. I know you’re not asking about back pain here but all of this pain was just ‘the norm’ to me and I assumed everyone, pretty much, struggled a little – we all have our own issues , type of motto. Move on and live life! Of course it’s gotten progressively worse and worse and worse!!! I am capable of posting more in depth, but will defer to later to do so since I am not feeling up to it right now <--- (light way of saying that I feel like serious crap). I just felt compelled to get my comments in so that we can compare similarities.
-
AuthorPosts