It's been a long road of learning to make appropriate accommodation or concessions for myself, along the way. Sometimes it's just not possible & I struggle with wanting to be my old self.
Some of what I have experienced, signs & symptoms come and go without warning or reason persistently...
Over the years more & more have developed as the comorbidities accumulate. struggle mostly to overcome lapses in recollection as some thing's simply haven't changed, but rather ebb & flow as I seek their triggers... Like trying to find a pattern through much noise and confusion. Just par among my continuing battles.
It started with & never quit, although not constant, before 2000, with..
Sensations of random stinging as though there is a bug (sometimes includes crawling sensation).
Alternatively, it can be a sharp shocking sensation, or full on burning. May not seem like a big deal but can be bothersome, certainly distracting, & perplexing if not just outright painful.
This is how I discovered my lump(s) 'lipomas' a herald, if you will.
None of my lumps are exceptionally large. To the contrary, I would say most are rather small... My arms similar to a bean-bag that you can feel the tiny pellets below the surface. Some areas have multiple crowding everything beneath but only mildly apparent above/externally, while others started as lumps but developed over time into fibrotic pads of tissue & still other areas seem completely spared.
The largest of my lumps feels hard & rubbery to the touch, between quarter & 1/2 dollar size however, I know this to be deceiving as even the surgeon was surprised when removal of similar proved to be larger & more difficult to extract than had been anticipated.
Of course, he's also the renowned chief of surgery that insisted lipomas' aren't painful, as well. Furthermore, he was emphatic that he had removed all surrounding tissues and proudly reported the benign status (as though I cared about cancer) like it proved something.
He would look at me sideways & ask some obviously back handed questions. trying to explain seemed to make it worse; as though I was his latest hypochondriac seeking pharmaceuticals & attention.
Similar in the way my husband at the time had so many times before him... who would ridicule me with his comments of disbelief, accusation of concocting reasons to avoid 'my duties', pushing me farther than my limits physically & emotionally.
This triggered something in me. So I set about trying to prove my pain to everyone & mind you the interWebs (lol) weren't what they are today. So with the help of my GP & the enlisted librarians, lab assistants, & a collection of nurse friends and I collaborated. My husband & I ultimately divorced. The surgeon eventually had the occasion to apologize.
There is validation but mostly it's a long hard road. I wish someone was able to warn me.. Not try to consume it all at once... i found on my own It can be completely overwhelming!! I remind myself this is a marathon, not a sprint {I seriously hate running}
and, btw... If I were to be asked my advice: you cannot approach a doctor in a frantic state or with too much desperation in your eyes & you've got to be able to speak knowledgeably even if you don't completely understand their language. I found it invaluable to read, read, read & research definitions of terminology! You must be your own best advocate!!
Today some of my lumps are actually non-painful to the touch, while others are tender to even light touch... Sometimes the area changes. I'm not sure I would describe it as migratory like I might the nerve pains I experience but overtime I believe it's related to some type of congestion .. lymph, interstitial, allergy to mast activation, ischemia, ... I imagine a number of activities beneath the surface are at play.
Whatever it is, it's always something ... Or multiple something's... Some days my head is clear from headaches and my back and hip don't completely debilitate me but that might also be the same day that I'm going on 3 nights without sleep and the IBS has kicked in & what feels like carpal tunnel has set into my wrists disabusing me of even a cup of coffee. Etc.. etc.. So here I am with all these random pains & complaints. Some days I can be touched while others Absolutely not!! Literally all my fat seems to revolt against me.
It's tiring for me to deal with and I'm sure even more so for my loved ones to hear about it constantly. So I've learned to keep it mostly to myself. I don't need to validate my pain anymore, to anyone! I just need to focus on managing it & making it through tomorrow by looking for the positives & the best way to treat myself!!
Showing posts with label Dercum's Disease. Show all posts
Showing posts with label Dercum's Disease. Show all posts
Friday, April 28, 2017
Sunday, August 21, 2016
Night Shades, Purines, Histamine!!
Best advice: Listen to your body and get in touch with what it has to say!
So I recently traveled. It was a great opportunity and a great next step toward regaining some life in my life. However, anyone who's ever tried to manage IBS issues knows, even short jaunts can be troublesome to our digestive programs.
Besides change in routine & eating habits, much less diet.. Somehow my body seems to get stage fright when varying commodes, that can give rise to varying bladder & bowel extremes, if you know what I mean..?
So upon my return it was no surprise that constipation was an issue... Let me spare you the details but to say I am now fully familiar with impaction & prolapse. And what felt like near death when combined with a fresh outbreak of blistering hives as a result of whatever may have lingered too long, as it where.
In an effort to get back on track, so to speak, I pursued fiber. Not additives or supplementals. The real thing via local seasonally grown produce!
While being mindful of those, previously discovered, disruptive Purines - autoimmune trigger; high in the likes of asparagus, spinach, mushrooms, cauliflower, & even green peas.
(http://www.whfoods.com/genpage.php?tname=george&dbid=51)
And when confronted by the beautiful purple Aubergine (eggplant) I recalled a different lifetime when Eggplant Parmesan was one of my signature dishes.
Although, it'd been more than 20+years hence.. I planned for this to be the most epic, organic, all fresh & clean ingredient culinary masterpiece since.
And It Was!! I ate it for two days!!
But Not Without Regret!!
& a new appreciation for the power of Nightshades and the immediate & horrifying affects they have on me.
I'm simply astonished!!
Over the years I have heard of some people having dietary disagreement with this category of foods: peppers ~bell to spicy~, eggplant, as well as potatoes & tomatoes
Even as far back as studying Shakespeare I knew that, among the many potions & poisons, Bella Donna was a nightshade. Furthermore theres been much folklore and wives tales of the poisonous fruit-vegetable tomato which was once merely grown as an ornamental not an edible. If I'm not mistaken, even the poisonous apple depicted in Snow White was actually based on these ideals....
But, never did I imagine that I was actually affecting my digestive in a poisonous way.
This is a shocking revelation! I devour spicey & enjoy peppers (pablano, jalapeño, bell, etc.) of all varieties. I Love tomatoes fresh and raw or cooked, stewed, even stuffed. Same goes for baked potatoes & French fries, I adore & really rely on a good potato salad in lieu of the fries these days.
That being said, I have concluded that the cooking process & smaller portions allowed for fewer signs & less symptoms previously.
Nonetheless when confronted with the truth you must address it and that has what this eggplant parm fiasco has done ~ really driven the message home.
1st day ~ I did an extreme 180• from earlier intestinal distress, but actually thought that might be a good sign, eggplant acting as laxative.
2nd day ~ malaise & headache arrived but I attributed that to recent stressors.
3rd day ~ full on lethargy & grogginess, right hand swollen like a balloon, a fresh patch of urticaria rising, with muscle fatigue, bone pain, joint & tissue swelling, along with some breathing difficulties.
So a month in (from date I started putting these words together)... I am still working towards recovery & researching further.
Here are a few internet breadcrumbs for you...
http://fawesome.ifood.tv/health/347832-eggplant-allergy-causes-symptoms-and-cure
http://www.livestrong.com/article/328582-eggplant-inflammation/
http://www.westonaprice.org/health-topics/nightshades/
Sunday, April 3, 2016
Accidental Setback
Though there's told to be Irish among my lineage I was not drunk nor had even begun to drink on the morning of St. Patrick's Day when I took my header.
I was stumbling a bit and a little off in the department of balancing capabilities but otherwise hadn't experienced any double vision for the previous three days. It'd been even longer since any vertigo, dizzy spells, or unequal pupils.
I had woken up, as usual, among those wee hours I sometimes call 'dark: 30' feeling some sort of exhilaration for the day, as if I could feel spring calling me & with my recent encouragements to expedite my recovery, I was intent on retreating to the overgrown garden ledge of repurposed wine bottles in the backyard, as soon as the morning and my body would allow.
As I had began to move about the prior day I noticed being a bit uncoordinated and weak, but I did well once seated in an area for gardening and if at nothing else I felt successful at pulling some weeds. Big things start with small steps?!
Well, as my luck would have it... (Google for Hee Haw's; if it weren't for bad luck, I'd have no luck at all, for reference)
before I was able to situate myself between the privacy fence & the retaining wall of wine bottles I began installing last year during my short summer remission...
It felt as if I was pushed by some invisible force and all my dead weight flung backwards in the perfect NesTea Plunge (you can probably Google that, too) to land my back and left flank ribcage directly onto the planted bottles, garden stool, & area I had intended to be productive in with great impact making me simultaneously scream out and loose all breath.
And although I have resolved to avoid the medical establishment at all costs I agreed to visit Dr.'sCare for xrays to ensure no ribs were broken or possible endangerment to internal organs. It would certainly help to have a few pain pills to ease recovery and to help ease Kevin's mind and besides he's paying to carry me on his insurance & what harm could come from a quick visit for a few rib snapshots.
It was fairly painless, other than that which had already been self-induced, until the physician entered the room asking if I had ever broken my back?? He wasn't able to determine if it was old or new....
But that wasn't my complaint?? What about my ribs, i asked? There were no pictures of my ribs??? I don't understand the miscommunication here & began to question if I were actually speaking English... Either way, within 45min. we were being referred to the ER with a CD copy of the spinal radiographs & a referral for broken back, at L5.
It wasn't until 12hrs. thus that we were on our way home. More Xray's & CATscan later. I won't regale you further with the dramas therein but to say, although I did appreciate the pain relievers & anti-inflammatories I remain otherwise wholly dissatisfied.
I spoke to everyone about the ribs & flank pain but their attentions were diverted by the referral of a broken back.
I referred to my chronic conditions succinctly as ever with question in regard to Lipoma(s) located in the area of impact and even after outlining all of the Spinal diagnosis I have had since falling out of that car over 30years ago & complying with their protocols otherwise.. (Repeat with radiology dept.) At the end of our extended time together (at Kevin's great expense) I left with the same questions, 2 prescriptions, & a referral which remains unused.
Dr.'s report indicates no acute breaks, indicates at least one of the Lipomas but doesn't recognize it as such or refer further other than contusion while Radiology report doesn't reference Lipoma at all even though it was specifically spoken of and palpated & in fact denies any spondylolisthesis at L5 or otherwise in the thoracic region (although KNOWN to exist).
And when Kevin questions directly about the popping that he himself feels on my ribcage, is told that the xrays & catscan can miss small fractures & separations. In addition to missing the Lipomas!?
What Was The Point?? I Ask!!
So today, approx. 3wks hence I still have the swelling, discomfort, & popping ribs... I'm not without a pillow at my side to hold myself in place if cough or sneeze comes about.
Luckily ?? I have had experience with Thoracic Outlet, Costochrondritis, & Tieze so I will simply continue self-care.
I'm frustrated & I genuinely have requested that Kevin remove me from his policy!!
Weird item to note... Although I typically bruise with ease & anticipated the absolute worst looking pool of a hematoma along my left side.... The bruising never arrived!!
?? It was explained to me that in this muscular area the blood may remain on the opposite side.... But still I expected some mild discoloration if not out right bruising?? Weird!
I was stumbling a bit and a little off in the department of balancing capabilities but otherwise hadn't experienced any double vision for the previous three days. It'd been even longer since any vertigo, dizzy spells, or unequal pupils.
I had woken up, as usual, among those wee hours I sometimes call 'dark: 30' feeling some sort of exhilaration for the day, as if I could feel spring calling me & with my recent encouragements to expedite my recovery, I was intent on retreating to the overgrown garden ledge of repurposed wine bottles in the backyard, as soon as the morning and my body would allow.
As I had began to move about the prior day I noticed being a bit uncoordinated and weak, but I did well once seated in an area for gardening and if at nothing else I felt successful at pulling some weeds. Big things start with small steps?!
Well, as my luck would have it... (Google for Hee Haw's; if it weren't for bad luck, I'd have no luck at all, for reference)
before I was able to situate myself between the privacy fence & the retaining wall of wine bottles I began installing last year during my short summer remission...
It felt as if I was pushed by some invisible force and all my dead weight flung backwards in the perfect NesTea Plunge (you can probably Google that, too) to land my back and left flank ribcage directly onto the planted bottles, garden stool, & area I had intended to be productive in with great impact making me simultaneously scream out and loose all breath.
And although I have resolved to avoid the medical establishment at all costs I agreed to visit Dr.'sCare for xrays to ensure no ribs were broken or possible endangerment to internal organs. It would certainly help to have a few pain pills to ease recovery and to help ease Kevin's mind and besides he's paying to carry me on his insurance & what harm could come from a quick visit for a few rib snapshots.
It was fairly painless, other than that which had already been self-induced, until the physician entered the room asking if I had ever broken my back?? He wasn't able to determine if it was old or new....
But that wasn't my complaint?? What about my ribs, i asked? There were no pictures of my ribs??? I don't understand the miscommunication here & began to question if I were actually speaking English... Either way, within 45min. we were being referred to the ER with a CD copy of the spinal radiographs & a referral for broken back, at L5.
It wasn't until 12hrs. thus that we were on our way home. More Xray's & CATscan later. I won't regale you further with the dramas therein but to say, although I did appreciate the pain relievers & anti-inflammatories I remain otherwise wholly dissatisfied.
I spoke to everyone about the ribs & flank pain but their attentions were diverted by the referral of a broken back.
I referred to my chronic conditions succinctly as ever with question in regard to Lipoma(s) located in the area of impact and even after outlining all of the Spinal diagnosis I have had since falling out of that car over 30years ago & complying with their protocols otherwise.. (Repeat with radiology dept.) At the end of our extended time together (at Kevin's great expense) I left with the same questions, 2 prescriptions, & a referral which remains unused.
Dr.'s report indicates no acute breaks, indicates at least one of the Lipomas but doesn't recognize it as such or refer further other than contusion while Radiology report doesn't reference Lipoma at all even though it was specifically spoken of and palpated & in fact denies any spondylolisthesis at L5 or otherwise in the thoracic region (although KNOWN to exist).
And when Kevin questions directly about the popping that he himself feels on my ribcage, is told that the xrays & catscan can miss small fractures & separations. In addition to missing the Lipomas!?
What Was The Point?? I Ask!!
So today, approx. 3wks hence I still have the swelling, discomfort, & popping ribs... I'm not without a pillow at my side to hold myself in place if cough or sneeze comes about.
Luckily ?? I have had experience with Thoracic Outlet, Costochrondritis, & Tieze so I will simply continue self-care.
I'm frustrated & I genuinely have requested that Kevin remove me from his policy!!
Weird item to note... Although I typically bruise with ease & anticipated the absolute worst looking pool of a hematoma along my left side.... The bruising never arrived!!
?? It was explained to me that in this muscular area the blood may remain on the opposite side.... But still I expected some mild discoloration if not out right bruising?? Weird!
Saturday, February 6, 2016
If you're feeling sad ~ don't read
Thoughts from a burdened mind..
I don't dream of compassion or hunger for your attention anymore. I used to think it would make me feel better, I thought it would help the hurt..
But you had too much of your own, I forgive you abandoning me even when you were there.
And those times I was beat up on the inside which made the outside seem even more bleak.. it hurts to know it was you helping torture my esteem,
I forgive you for ever treating me mean.
I don't cast stones or arrows, I merely wish you love! & if I could change a thing that ever harmed, please know I would!
I've said goodbye to living in a number of ways but kept existing just the same. .So many apologies of my own to make.
Must've done some truly wicked things to land this lot that's been handed me. So that being the case I'll bare it, true but, it doesn't mean it should also afflict you.
Keeping inner demons at rest is a struggle, when you lay quietly waiting for sweet death they come flooding in like old familiar songs.
I've wrestled and fought with illness, myself, and the ones I love... I don't know what I'm supposed to do now, it seems God doesn't even want me above. .
.. the future is bleak & I'm already a burden it's true, if I could sneak away to some shack, I promise that's what I'd do.
I'm in pain everyday now but it's not because of you. I keep it to myself if I can .. trying not to let it show. I vent & purge occasionally, sorry if you overheard.
Wednesday, January 27, 2016
You may ask yourself...
No pharmaceuticals, what?!!?
If you were like me.. You're thinking... That's crazy talk! I want drugs to make it all go away...
Well, in my case, time & time again they've proven to be more trouble than they are worth & from my understanding of chronic illness shouldn't be relied on as permanent maintenance companions; which eventually require additional medications to either compliment or counteract their own effects.
I find that confounding, especially since we faithfully rely on M.D.eities & overwhelmingly their prescription pads with the highest hopes of wellness.
Do you even remember the last time your doctor queried you about your diet (outside discussion of bowel movements)?? Or if they did, were you indignant that a food study was even mentioned?
I bet there were at least 3 questions about your mood & stress level, though... potentially even a pill for said issue that you've seen/heard a commercial about.
I bet there were at least 3 questions about your mood & stress level, though... potentially even a pill for said issue that you've seen/heard a commercial about.
I'm not a proponent of any particular diet or medical plan so don't get scared, not selling any snake oil here. But, I know I don't fit squarely in any of the check boxes laid before me so, I guess you could say, I've simply chosen a different path over time.
One of the most impactful things I did while educating myself on the particular ailments I must live with (chronic not fatal) was to query dietary concerns that may affect their expression. What we put into our bodies we get out.
Food is not just fuel, it's medicine. And just like I can't rely on doctors, I've found I can't rely on the food pyramid & supply "they've" sold me my entire life. Even what appears to be fresh, natural, healthy, .. on our shelves has become a lie!
No I haven't become vegan or other such labelled but, I have become much more aware & make infinitely better choices. And though I am typically against exclusion, fast food is non-food and should be thoroughly eliminated!
For me; balance is a key word. Everything (....) in moderation & because I have recognized I am a zebra: not a horse, I continue to strive.
I look forward to following how the doctors are trying to catch up....
Precision Med, nih, fda, genetics @
http://www.usnews.com/news/articles/2015/01/30/white-house-details-precision-medicine-initiative
http://www.usnews.com/news/articles/2015/01/30/white-house-details-precision-medicine-initiative
Along with my diet getting back to nature, I'm trying to incorporate that across the board with more of a whole~istic approach.
Upcoming blog entries will outline some of the small changes that can have big impact that I've adapted to recently, like...
My biggest leap has probably been no television in the bedroom. You may think this a small hurdle but for me... television on in the bedroom has been a lifelong crutch & truly, this dramatic change was only precipitated in my life, when the dinosaur size relic recently died.
I brought a salt lamp in for ambient light and replaced the background noise with meditation music (some with purported healing frequencies, yes, as in MHz) that has shown some recent success in more successful/restful sleep patterns .
I brought a salt lamp in for ambient light and replaced the background noise with meditation music (some with purported healing frequencies, yes, as in MHz) that has shown some recent success in more successful/restful sleep patterns .
So for now, thanks for hanging in there with me, I know it's tough. Hopefully you'll find what works for you soon... I'm off to herbal balneotherapy (aka: the tub)
;)
;)
Bathroom floor
Chronically Ill.. ?!
But..
.. you don't look sick.
..you were just out yesterday.
.. oh, you're too young to sit around, etc...
Oh, come on & join us, you'll have fun getting out.. Or
Don't invite her, she won't come anyway.
Lazy.
Excuses, excuses....
Those are just a few phrases you might hear on any given day ~ maybe even from someone you love (it might even be yourself).
Forgive them, they know not what they do.
Today, for instance; I woke from one of the best sleeps I've had in ages. Yes, I woke at 4am but that's OK.
I was able to move from the bed for coffee (1/2caf) without too much ado so, I decided to do something that seriously required attention but wouldn't take any herculean effort, my hair. It's long & unruly with that Poliosis skunk stripe that I'm confused on managing, plus it hadn't been cut in years.
I set myself up at the bathroom vanity and began sectioning, so far, so good. I can do this!
I even brought a bar stool to sit occasionally, no worries.
I clipped a few inches away & allot of bulk that made my neck feel lighter. Success!
Wow, I'm doing good, I'm gonna style it & maybe even make it one of the very rare days with cosmetics....
Well, with all my high hopes of taking a selfie & prancing my preened self in public.... I compose this message to you now from the bathroom floor. Some days even with the best intentions & efforts it just doesn't work out. Luckily, no ones invited or expecting me any where. I'll just wait the pain out here, disappointing no one but myself.
Today is still a good day! There are lots of daylight hours left and if this is the worst that happens, I'm still doing well comparatively.
Thursday, January 14, 2016
Reflection from beginning of Dercum's journey
Reading posts in some of the Dercums Support Groups I can't help but recall when I first began my dercums journey. I feel so much compassion toward them as they are now fitting into those old familiar painful shoes of mine.
There's a roller coaster of emotions, every aspect of your life is touched and though you don't want to be a martyr you look for a little compassion and understanding.
Before my diagnosis I delivered my last child, @ age 30, after placenta-previa pregnancy. Within 3yrs I found myself slowly recouporating from hysterectomy with excessive tissue ablation and subsequently found myself trying to survive a troubled marriage. Stress & emotion were off the charts!
I was experiencing some tremendous headaches but, bouts with migraines weren't out of the norm prior to hysterectomy. I began also to notice a lump in my thigh (which had been unnoticeable for years) became more prominent & tender while other adjacent areas felt like thickened pads - well beneath the skin but, above the muscle felt soar - I almost let them go overlooked, or be explained away until the crazy sensations of getting bit by a bug but, no bug. A prickling feel or like getting smacked or pinched, or even burned but no cause or mark apparent. I had alot of ramdom swelling & would become so fatigued and achy that I had trouble focusing & functioning in my normal routines.
When, lumps of varying shapes and sizes had grown in my arms as well (but at a more alarming rate) causing much discomfort & seemingly circulatory problem, I finally reached out to my GP and the search was on.
My history & current symptoms met the clinical criteria for Dercum's Disease (with exception of obesity, @ that time, & age of onset) so I was ushered through the process of differential diagnosis ruling out Lupus, MS, Lyme, & the like. It was a blessing to have a doctor that was a partner in my care, as it certainly didn't seem I was getting support from elsewhere (home or work). She even did some of her own cutaneous biopsies, like mole removal before referring me to surgeon & neurologist.
I was excited to see the surgeon for the feeling in my arms was like carrying around so much extra; painful aching weights. Although, he dismissed my conversations toward the newly discovered (rare) Dercum's condition in fact saying upon examination that 'these are Lipomas & they don't hurt", even in light of my tears as he palpated, I begged to differ... he was feeling from the outside but tbey were extremely hurtful to me on the inside!
Although I was riddled with lumps from rice to large marble size from shoulders to wrists predominantly, he agreed to remove the largest most intrusive from my upper arm, which had caused mobility issues, for biopsy & consideration for subsequent liposuction treatments.
I think the most at peace I had felt in ages was when the general anesthesia wore off & neurological studies scheduled. Somehow this all equated to justification for me! Well respected Medical professionals weren't evaluating a hypochondriac, like some may have suggested.
I gotta say persuing your own medical mystery is daunting and I relished in actually finding a trail leading toward answers in light of so many questions ... especially, when feedback from family &/or employers had been less than supportive (in the case of my ex- I can now refer to as abusive).
Ultimately. I learned a lot from the neurologist who DID take the time to talk about Dercums | Adiposis Dolorosa. Much of what he shared with me as to my particular conditions have stayed with me as kernels of truth since.
For instance, Zebra vs. Horse: Zebra is the American medical slang for arriving at an exotic medical diagnosis, when a more common place explanation is more likely. Medical interns are instructed.. "When you hear hoofbeats, think horses not zebras."
Therefore it would be almost futile hoofing around trying to find an esoteric doctor that might have more clues toward a cure (of which none is known) for your ailments.
Furthermore, he would make referrals to MayoClinic where they could study me.
Either scenario ... I would be the guinea pig?
Ultimately, I agreed with the logics shared and relented to simply let him help me manage the symptoms. We'd figure it all out, not to worry. (Of course my supportive then husband had convinced me that esoteric meant 'made-up, nonexistent, fairy tale' and pertained to my diagnosis ~ not a reference about doctors care for zebras. Later he would whinnie or notice my resemblance to our horse, for good measure)
I began with low doses of Nerontin but ended up with high dosage and a Kidney infection. To add insult to injury, the neuro then relocated his practice. I tapered off the drugs. This was a hurdle in and if itself!
During this time i had also been referred to a spinal surgeon for cervical stenosis; who didn't recommend surgery. But through pain management, physical therapy, & spinal injections I began to try and adapt to a better me.
You could say I went rogue sometime after that... But that was the gist of the beginning of this journey for me. I share in hopes someone won't feel the same hopeless desperation!
My initial feelings where that diagnosis was key. I believed once everything came together under a label, then medical intervention would certainly fix! it & everyone around me would rally in a positive manner. In my reality, that was fairy tale fodder.
No matter your chronic conditions or comorbid diagnosis' ... I share a few ideas that may be practical in your journey from mine;
Forgive Yourself!
Make allowances for others ___, you can't change them, only how you responsed. (You're not doing it for them ~ avoid stressing yourself ~ OK to be selfish)
Read up on 'The Spoon Theory'
Learn to say WHEN!, Before it's too late & without apology.
Take time to make sure you're breathing! Literally! Work on your breaths!
Exercise is important look into Yoga & water therapies, some days laundry is enough.
Educate your diet! Cut out Non-Foods!
There's a roller coaster of emotions, every aspect of your life is touched and though you don't want to be a martyr you look for a little compassion and understanding.
Before my diagnosis I delivered my last child, @ age 30, after placenta-previa pregnancy. Within 3yrs I found myself slowly recouporating from hysterectomy with excessive tissue ablation and subsequently found myself trying to survive a troubled marriage. Stress & emotion were off the charts!
I was experiencing some tremendous headaches but, bouts with migraines weren't out of the norm prior to hysterectomy. I began also to notice a lump in my thigh (which had been unnoticeable for years) became more prominent & tender while other adjacent areas felt like thickened pads - well beneath the skin but, above the muscle felt soar - I almost let them go overlooked, or be explained away until the crazy sensations of getting bit by a bug but, no bug. A prickling feel or like getting smacked or pinched, or even burned but no cause or mark apparent. I had alot of ramdom swelling & would become so fatigued and achy that I had trouble focusing & functioning in my normal routines.
When, lumps of varying shapes and sizes had grown in my arms as well (but at a more alarming rate) causing much discomfort & seemingly circulatory problem, I finally reached out to my GP and the search was on.
My history & current symptoms met the clinical criteria for Dercum's Disease (with exception of obesity, @ that time, & age of onset) so I was ushered through the process of differential diagnosis ruling out Lupus, MS, Lyme, & the like. It was a blessing to have a doctor that was a partner in my care, as it certainly didn't seem I was getting support from elsewhere (home or work). She even did some of her own cutaneous biopsies, like mole removal before referring me to surgeon & neurologist.
I was excited to see the surgeon for the feeling in my arms was like carrying around so much extra; painful aching weights. Although, he dismissed my conversations toward the newly discovered (rare) Dercum's condition in fact saying upon examination that 'these are Lipomas & they don't hurt", even in light of my tears as he palpated, I begged to differ... he was feeling from the outside but tbey were extremely hurtful to me on the inside!
Although I was riddled with lumps from rice to large marble size from shoulders to wrists predominantly, he agreed to remove the largest most intrusive from my upper arm, which had caused mobility issues, for biopsy & consideration for subsequent liposuction treatments.
I think the most at peace I had felt in ages was when the general anesthesia wore off & neurological studies scheduled. Somehow this all equated to justification for me! Well respected Medical professionals weren't evaluating a hypochondriac, like some may have suggested.
I gotta say persuing your own medical mystery is daunting and I relished in actually finding a trail leading toward answers in light of so many questions ... especially, when feedback from family &/or employers had been less than supportive (in the case of my ex- I can now refer to as abusive).
Ultimately. I learned a lot from the neurologist who DID take the time to talk about Dercums | Adiposis Dolorosa. Much of what he shared with me as to my particular conditions have stayed with me as kernels of truth since.
For instance, Zebra vs. Horse: Zebra is the American medical slang for arriving at an exotic medical diagnosis, when a more common place explanation is more likely. Medical interns are instructed.. "When you hear hoofbeats, think horses not zebras."
Therefore it would be almost futile hoofing around trying to find an esoteric doctor that might have more clues toward a cure (of which none is known) for your ailments.
Furthermore, he would make referrals to MayoClinic where they could study me.
Either scenario ... I would be the guinea pig?
Ultimately, I agreed with the logics shared and relented to simply let him help me manage the symptoms. We'd figure it all out, not to worry. (Of course my supportive then husband had convinced me that esoteric meant 'made-up, nonexistent, fairy tale' and pertained to my diagnosis ~ not a reference about doctors care for zebras. Later he would whinnie or notice my resemblance to our horse, for good measure)
I began with low doses of Nerontin but ended up with high dosage and a Kidney infection. To add insult to injury, the neuro then relocated his practice. I tapered off the drugs. This was a hurdle in and if itself!
During this time i had also been referred to a spinal surgeon for cervical stenosis; who didn't recommend surgery. But through pain management, physical therapy, & spinal injections I began to try and adapt to a better me.
You could say I went rogue sometime after that... But that was the gist of the beginning of this journey for me. I share in hopes someone won't feel the same hopeless desperation!
My initial feelings where that diagnosis was key. I believed once everything came together under a label, then medical intervention would certainly fix! it & everyone around me would rally in a positive manner. In my reality, that was fairy tale fodder.
No matter your chronic conditions or comorbid diagnosis' ... I share a few ideas that may be practical in your journey from mine;
Forgive Yourself!
Make allowances for others ___, you can't change them, only how you responsed. (You're not doing it for them ~ avoid stressing yourself ~ OK to be selfish)
Read up on 'The Spoon Theory'
Learn to say WHEN!, Before it's too late & without apology.
Take time to make sure you're breathing! Literally! Work on your breaths!
Exercise is important look into Yoga & water therapies, some days laundry is enough.
Educate your diet! Cut out Non-Foods!
Friday, August 8, 2014
Im very much my Mothers Daughter
It may be your worst fear... Turning into your parents.. & although there are some changes we may try to make in the vein of efforts along the way toward differing ourselves ...in the end, You can't change your DNA!
All this time, in the scheme of trying to sort my medical woes out... I have excluded my mother from the equation(s) because of her Polio.. Serious Mistake!
As it turns out, she's not the exception - not the rule either - but most definitely (I feel) integral to fitting the puzzle pieces together!
As it turns out.. Her diagnosis came at the height of the polio epidemic/salk vaccine years('51~60). She was even a march of dimes poster child.
She was born 1949 SC. At approx 5yrs old, while playing & running with her cousins one day; she inadvertently stepped into a hole injuring her ankle. Because they lived on an island plantation only accessible by ferry; she was merely attended to at home and sent to bed. During the night my grandmother was awoken by a noise & came to my mothers aid who had apparently fallen on her way to use restroom. Her leg wouldn't work!
Monday, July 28, 2014
Think about your troubles
As it would seem, everything comes together to work against me. Same issues are always the underlying factors.
I have self managed for as long as I can muster. I don't worry, I give it to God, and every time I am reassured by his grace & mercy.
I know my body even if the recent doctors and their level of care can't appreciate. So begins a cycle of self diagnosis & homeopathic care only reaching out when pain becomes so unbearable & seemingly unsurmountable.
At this time, I have become increasingly aware that I must seek out a medically licensed professional for intervention. But, as most others would simply make an appointment or drive to the emergency room... I am not afforded the same luxury.
I am mortified by the prospect because of the contraindicated care and almost degrading process, as encountered on these occassions since diagnosis.
An effort in futility; getting "them" to understand that I have a tissue disorder that coincides & interferes with all of my associated signs & symptoms!
I am a Zebra not a Horse!
[Not disturbed/Not a drug seeker]
So today I struggle with how to pay the past due premium on the Obama~care brand of BCBS or any subsequent bills if I were to actually go to a doc or ER.
I have a Tissue Disorder!! Goes by a lot of names (ie> Adiposis Dolorosa, Dercum's Disease, ..) and is under appreciated or misdiagnosed as a lot of other things because of its rarity.
My pain ebbs & flows, its chronic so I've dealt with it & educated myself along the way. Really since 1985 when I injured my neck/back in a type of MVA. Although a number of findings such as mild scoliosis, cervical spondylitis, & arthritic changes where found during chiropractic care it wasn't until after 2000 that clinical diagnosis was made. The struggle is real!!
I pursued answers & treatment with nuerologist & orthopedist in conjunction with gp until it seemed more harm than good was coming of it. Focusing on self managed spinal care & pain management since having to discontinue Neurontin and interspinal injections as well as other therapies with regard to: thoracic outlet, cervical stenosis, levo-scoliosis, (including ischemic attacks & a bout with gastroenteritis).
So today, I acknowledge my fears and with the prayer that my grandmother spoke from Timothy... To set out to find a doctor !
(And hopefully with the white papers available from Dr.Karen Herbst (AZ) I will find THE doctor!)
geographically: (hoping for)
Rock Hill SC / Charlotte NC
discipline: (???)
Rheumatology, Endocrinology, Neurology
3yrs ~synovial cyst of transverse process at T12/L1, chronic pain/fatigue, Barrett's Esophagus, & abdominal free fluid.
2yrs ~2 bouts flu, followed by a shingles appearance rash on back, subsequent sinusitis with perceived decrease in hearing.
1yr ~Costochrondritis /Tietze,
(hypertension & murmur cardiologist contradicted)
discontinued all prescriptions
6mon ~Progression of right-sided inflammation (joints & tissues) neck to toes with upper & lower nerve issues.
(Experienced a carbuncle; now healed)
Currently Experiencing
Exhaustive Fatigue
throat constriction with pain
(not globlous? nor sore throat)
pain at base of tongue,
neck swelling & discomfort, persistent cough of sticky mucus,
neck muscles tight with spasm,
Swollen tonsils & nodes
Serious discomfort & perception of lump at collarbone/brachial area
vision changes,
hip and shoulder laxity with pain
Changes in coccyx - sacral
new worsening areas of
numbness, tingling, & shooting
Lipomas
intermittent disturbances
Rashes,
bladder, & bowel
Livedo Reticularis
Familial;
Maternal Grandmother suffers from a number of related conditions with tissue disorder as underlying cause including; thyroid, angina, loefflers, fibromyalgia, etc...
Eldest child schuerrman's spine & migraine syndrome
Middle child born with Mesynchemal Hamartoma of liver
Youngest child gallbladder & migraines
Mother contracted Polio as child
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