Ebb & Flow ~ Dealing with Dercum's

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!!

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. 

http://www.dercumsdiseasefoundation.com/home.html

Lymphoscintigraphy Overview Background

Lymphoscintigraphy Overview Background Lymphoscintigraphy (sentinel lymph node mapping) is an imaging technique used to identify the lymph drainage basin, determine the number of sentinel nodes, differentiate sentinel nodes from subsequent nodes, locate the sentinel node in an unexpected location, and mark the sentinel node over the skin for biopsy. Sentinel node mapping is rapidly becoming an alternate staging procedure for the axilla in managing early breast cancer.[1] Several well-conducted studies have provided high-quality evidence for its usefulness.[2] Sentinel node scanning was initially studied in cutaneous melanomas to detect lymphatic drainage patterns prior to surgery. The procedure is applicable to almost all regions of the body, but the greatest impetus to the technique came with the application of the procedure to identify breast sentinel nodes. The sentinel node is the first node to receive metastatic deposits in a malignancy. Lymphoscintigraphy is an important procedure because if the sentinel node is free of metastasis, subsequent nodes are also likely to be free of disease. The sentinel node is generally defined as follows: The node closest to the primary lesion The node with a radioactive channel leading to it The node with the highest count rate on lymphoscintigraphic imaging and probe counting The first node visible on lymphoscintigraphic imaging The blue node on dye injection technique The node with a blue channel leading to it Lymphoscintigraphy allows the patient to avoid axillary clearance surgery (axillary lymph node dissection) if the sentinel node is negative for metastatic disease. Given the high prevalence of breast cancer worldwide, the possibility of avoiding axillary clearance surgery in a significant number of patients makes this an extremely valuable procedure. This topic is limited to lymphoscintigraphy in breast cancer. Applications for malignant melanoma will be introduced, but a detailed discussion is beyond the scope of this article. Both radionuclide and nonradionuclide methods (blue-dye methods) will be discussed. Indications Lymphoscintigraphy is indicated for proven palpable or nonpalpable invasive breast carcinoma for which removal of the primary tumor and axillary node dissection would be indicated.[3] Contraindications Absolute contraindications to lymphoscintigraphy include clinically positive (N1) axilla and allergy to component used.[1] Relative contraindications to lymphoscintigraphy include the following[4] : Prior biopsy (especially excisional biopsy) Previous breast and axillary surgery Advanced disease (associated with fatty degeneration of nodes with reduced function) Neoadjuvant chemotherapy Multicentric and multifocal disease Ductal carcinoma in situ High body mass index and old age Pregnancy Surgeon’s experience and skills Other Applications Lymphoscintigraphy has become widely accepted in several other applications besides breast cancer,[5, 6] including malignant melanoma (stage I and II disease). Tc 99m tilmanocept is also approved for intradermal or SC injection for melanoma mapping.[7] The Multicenter Selective Lymphadenectomy Trial concluded that sentinel node scanning is a low-morbidity procedure for evaluating the regional nodal basin in early melanoma and should become the standard of care.[8] Other applications include head and neck cancer, thyroid cancer, non–small cell lung cancer, gastric cancer,[6] penile cancer,[9] and vulvar cancers.[10

Its all related.. beginning with Scheurrmans spine to Osteochrondritis / My right side including arm, shoulder, knee, hip, rib cage & liver. NOW ESOPHAGUS!

http://en.m.wikipedia.org/wiki/Osteochondritis

OSTEO-CHONDRITIS DISSECANS This is an unusual condition that develops in the last few years of growth, and is thought to occur because a small segment of the joint surface loses its blood supply long enough, or repeatedly enough, to become separated from the main body of the bone. The joint surface (articular cartilage) remains intact for a few months to several years, but when it splits around the margins of the lesion, the fragment of bone and articular cartilage separates and becomes an osteo-chondral loose body. This may click and cause discomfort and/or swelling. It may also dislodge and get jammed between the bones causing episodes of locking. The treatment is either to replace the fragment back in the crater it came from, and try to get it to heal, or if it is thought that is not going to succeed, or has already failed, then to just remove the loose body. That still leaves the question of the crater. If it is quite small, no further treatment may be necessary. If, on the other hand, the remaining crater is large enough to cause ongoing symptoms, or if it is lie that early arthritis will result, then it is desirable to find another way of trying to heal the defect. The most popular technique these days is to take some of the healthy articular cartilage from the joint, culture it in the lab for about 6 weeks, and then do what is called an Autologous Chondrocyte Impantation (ACI). If, as is usually the case these days, the graft comes on a collagen patch (matrix), then it is called Matrix Autologous Chondrocyte Impantation (MACI).