Life-saving Pain Relief for Clara Cosmia

 

The Cut in Healthcare Funding

On Monday August 30, 2021 Clara’s pain clinic delivered the crushing news that her IV treatments for severe pain would no longer be covered by OHIP (the Ontario Government’s health insurance plan). The goal of this fundraiser is to pay for the treatments that Clara's doctor prescribed, which without, she can no longer function due to excruciating daily pain.

 

 

The cancellation of funding for Clara’s pain treatment was a devastating shock. For two years Clara has been receiving weekly intravenous infusions of medication for her joint, nerve, and migraine pain. This treatment also supports a drastic improvement for Clara’s mental health. The infusions provided very important life changing relief - with the IVs she was able to resume some productivity and to regain a small amount of independence. Clara was overjoyed when she could take care of her basic hygiene needs unassisted. These daily tasks are too painful to manage without the IV treatments. While she still needs assistance with bigger chores like food prep, the ability to take care of personal hygiene has made a massive difference in her daily life and gaining independence!

 

 

 

The Consequences

 

Without the infusions Clara’s pain levels return to intolerable levels dramatically affecting all areas of her life. She's not able to continue the (very gentle) movement to help support her hyper-mobile joints, or other essential activities to take care of herself. Thus her health steadily declines, the longer the pain levels are unmanaged.

 

 

Furthermore, Clara has many conditions that have cascading effects on one another. This creates a negative cycle of deteriorating health that's almost impossible to stop. Higher pain levels also mean more issues with sleep and ability to keep food down, causing weight/muscle mass loss, further spiking her pain levels...

 

 

These negative spirals effectively confine Clara to her bed or sofa within a mere couple weeks of missed medication. Days spent bed-ridden mean she is in so much pain she cannot work or concentrate on anything other than just trying to get through the day, hoping tomorrow isn't worse.

 

 

Clara has worked so hard for improvements in her health. Even with the help of countless kind people over the last couple of years, she still had to claw for every inch of progress she made. She had to do neurophysical rehab for months on end, just to learn how to walk again. She’s so terrified of being forced back into that inhuman and excruciatingly painful bed bound existence, all because the provincial government suddenly cut funding for her pain medication treatment without warning.

 

 

Initially the infusions were priced at $750 (Canadian) per treatment. Clara’s doctors believe that she needs them weekly, but she simply cannot afford that. She has explored every option to fund treatments and space them out as much as possible. She felt lucky to be able to borrow money from a kind friend to cover the cost of a couple treatments. Against doctor’s recommendations, Clara was forced to reduce her treatments to a bi-monthly schedule due to the unmanageable cost. Obviously this wasn't a sustainable plan, as a result of missed treatments her pain levels have increased substantially from what they were when the government covered the costs of weekly infusions.

 

 

We did receive some bright news that after 5 infusions at full price her pain clinic has found a way to lower the cost of the treatments to $375 (Canadian) per treatment. Clara and her family have been desperately trying to chase down any leads for further funding but unfortunately all avenues tried were dead ends or funding was denied outright.

 

 

 

Clara Is Grateful

 

Clara is already so appreciative for the support she's received so far, and she's aware that her illness's mercurial nature can make her seem flakey. The reality is that sometimes she's not able to update as much as she'd like, but she wants to be sure that despite her limitations everyone understands how grateful she already is.

 

However at the urging of her supporters, with a reluctant heart, she's realized she needs to ask for her community's help once again. She deeply appreciates how they saved her life 3 years ago and didn't want to ask again. If there was any other way she could manage it she would without hesitation, but she's tried everything over the last few months with worsening pain levels, to no avail. We're living in a complicated time; our government should protect its citizens from situations like this but that's not always the case and sometimes you need to ask a neighbour for that help.

 

 

The Ask

 

 

Our hope is that with the lowered price, and the generosity of folks through this fundraiser, it will enable Clara to afford the weekly treatments she needs to keep going... She needs to be able to move away from the unstoppable spirals of worsening health that something like this medication restriction can precipitate... To help her have her pain levels low enough to be able to do small things that positively impact her health... and crucially, to get her back on her path of recovery, healing and independence!

 

 

Yes, the road has been very bumpy with many a setback, but the improvement her physical body and mind have made since the community's wonderful support 3 years ago has been monumental. She went from completely bed-bound, unable to get to the bathroom without help, to finally being well enough to mostly move about her apartment on her own, as her body allows, to start creating and working again. Just being able to pet her cats or wash her face relatively pain free has been a wonderful gift. But as well as a gift she also realized it’s a human right that she, unfortunately, has to fight for.

 

 

If you're able, please help her fight

 

 

 

The Journey

 

 

Although Clara has always had to work around health issues she didn't become disabled till her early 20s, and prior to that she managed to live a mostly abled life. A few years ago, Clara was a model, cosplayer, and an aerial gymnast training to start competing provincially. She had also earned a degree in computer science and was employed by a major firm as a code developer.

 

 

It was at this point that a series of health issues worsened and she could no longer work around or ignore them. A sprained wrist and tendonitis, suffered in the studio, strangely failed to heal. Pain then appeared in her shoulders, her pelvis, her low back, her knees, and her hands/wrists. Despite numerous doctors, medications, and therapies she continued to worsen and within a year she couldn't even hold an item of clothing to dress herself with due to the severity of her pain and mobility issues.

 

 

A lot of her joint pain and weakness appears to be caused by her Hypermobility which means that her ligaments aren't strong or tight enough to hold her joints properly in place. That means they are prone to subluxate, or partially dislocate. This is especially difficult for her to deal with in her fingers, and ribs. Yes, that is as painful as it sounds…. So far doctors have not diagnosed it as Ehlers Danlos Syndrome, but the symptoms are very similar.

 

 

On top of all this Clara’s joint pain and weakness have been compounded by an increase in frequency and severity of her debilitating chronic migraines, which have occurred almost daily for the last two years (she's had them her whole life but has only recently been plagued by them to this impairing extent). They have an added issue of causing severe stomach problems which destabilizes her core and makes rib and hip subluxation more likely (especially as some of her migraines can inflict body-wide muscle weakness sporadically which exacerbates it all).

 

 

So as her health was declining, not only was Clara forced to abandon the sport she loved, but she found that the pain in her hands and her migraines meant she could not continue in the computer programming career she had worked so hard for. This was an especially crushing blow. She came from an impoverished background, raised by a single dad on social assistance, and it meant so much to her that she'd gotten a degree on her own (with government loans of course) that had career possibilities that would allow her to be comfortable, not living month to month for the first time in her life, and be able to help out her parents. While this realization was devastating Clara didn't even get the luxury of grieving for her lost future because she was struggling so much just to get through the day.

 

 

Shortly thereafter her illness had reached the point that she needed to use a walker, even to navigate her apartment. But even with this Clara’s spirit and humour shone through. She initially named her walker “Dory” in honour of the unstoppable heroine of Finding Nemo (as Dory’s motto – “Just Keep Swimming” resonated with her and she adopted it as an unofficial mantra). Later, however, she decided that “Dora” as in the Dora the Explorer series was a better model for the simple pun that she helps Clara "explore" more of her world.

 

 

Thanks to the generous support Clara received from her friends, and kind strangers, through her first fundraiser custom finger braces were fabricated for her and they have helped a great deal to give her back the use of her hands by preventing finger subluxations. That support allowed Clara to finally pay for medical expenses and invest in treatments that helped her recover, and gain strength, instead of just struggling to survive through daily pain.

 

 

Then the pandemic hit, restricting her access to medical support and treatments, trapping and isolating her in her apartment as a high-risk individual. It was obviously difficult, but the IVs were helping her weather the storm... Until they stopped when, as mentioned earlier, the Ontario Government ceased all funding of the main medication granting her hard won lower pain levels. There are still no updates from the Ontario Government to explain the sudden and cruel restriction of access (and blatant lack of care) for people like Clara, in desperate need of this treatment for chronic pain and mental health. Thus, this fundraiser will allow Clara to pay for her now steepened medical expenses.

 

 

 

 

Current Condition

 

 

One of the reasons this fundraiser is being managed for Clara is that she finds it hard to pour out her problems and especially difficult to ask for help.

 

But the fact is that, underneath her smile, there is a lot of pain. The pain induces insomnia, and the lack of sleep makes the pain worse which in turn exacerbates her plethora of comorbid illnesses, furthering her suffering and so on…

 

 

Specifically, she is suffering from:

 

 

 

 

 

 

 

 

 

 

Bad days can easily spiral and end up causing long term injuries, or even more hospital trips.

 

 

 

 

Clara has the spirit to fight, but she needs help. Most critically, she needs help to pay for the pain medication IVs. Without those, she is in far too much pain to cope, and healing or recovery of any kind becomes a distant dream.

 

 

You, her friends, or kind Internet traveler, have previously supported her and her gratitude is immense. Now, with humble hope, she finds she must turn to your generosity again to raise funds for her pain relief, therapy treatments, and essential living costs.

 

We have initially set the goal of this fundraiser at $30,000 to cover her recent treatments and between 3 and 5 months of pain treatments, depending upon the frequency, as well as supplementary professional therapies for physical and mental health, and better eyeglasses to alleviate the migraines as she just tested positive for a condition (vertical heterophoria) that needs an adjustment to her glasses prescription.

 

 

Privacy and Accountability

 

As with the previous fundraiser, Tim Bermingham will hold the funds for Clara and will disburse them only to cover pain relief medication, eyeglasses to rectify a vision defect, physical and mental health therapy treatments, and some essential living costs.

 

 

It would be wonderful if Clara ceased to need this pain relief, but we anticipate updating this fundraiser as time goes on to provide long term support for her. Her health issues are never fully going away but the goal of improving her quality of life to have more stability and less strife is a very realistic goal. With adequate medication and therapies, so she can live a fulfilling life, without constant torturous pain levels, and contribute to her community again.

 

 

Please help her if you can, every little bit counts....

 

 

For a more detailed understanding of Clara’s journey through illness please see her previous fundraiser for her braces here: https://www.gofundme.com/f/83q3r-help-give-clara-back-her-hands