Quality of Life Being Chipped Away

Quality of Life Being Chipped Away

I seriously thought that apart from manual Physical Therapy, I was set with the last of my important medical appointments being canceled due to the COVID-19 public health emergency. But, I just checked my messages to find now my ENT appt for tomorrow is canceled with no reopening date set. This means as the wax keeps building up in my ear canals, I will not have the opportunity to have it removed without access to this treatment. I will experience increasing ear pressure and more loss of hearing. What fun to have another challenge to take on.

Those without medical complications do not realize how the gradual elimination of our treatments can have such immediate and often long-term impacts on our lives. I have lost help with the jaw specialist for my dislocating jaw, colonics for the shutdown gut, dental work, along with my husband who lost his appointment to receive the hearing aids he had just been fitted for. Even my service dog has lost her help – no more eye examinations for her for a full year. She is now turning twelve and dealing with cataracts and deteriorating eyesight.

Ellen Lenox Smith

I know what I have described is nothing compared to those battling serious cases of this virus. I do not mean to sound selfish, for at least I still have a life to live. But many of you reading this also have medically complicated lives and hopefully, have learned what treatments to turn to help achieve a better quality of life. So, the additional losses of treatment providers mean potentially less and less quality of life to experience for what could be a very long time.

When I think of the years it has taken to find medical professionals capable of working with me to develop effective treatments for my condition, it is truly heartbreaking to watch this work slowly compromised in its effectiveness. Living with Ehlers-Danlos, one does not just recover normally from any secondary medical condition. We are vulnerable and prone to longer recoveries. I have endured twenty-five surgeries to improve life. Due to the elimination of critical treatment, I see my physical condition deteriorating through no fault of my own. Again, I know there is so much worse around me and to make it through this chaos not coming down with the virus will be a huge gift to hold on to.

I truly hope that all you who are reading this will have a positive ending to this pandemic. And I hope that all of those you care about will follow suit too. And if this is not the case, may you find the inner strength to cope with whatever you are given to deal with. Try hard to stay constructively engaged with purpose and be creative with things you can enjoy as you work to make it through the chaos of this anxiety-provoking period we find ourselves mired in.

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

Featured image: ID 98486187 © Yuryz | Dreamstime.com

Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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Toni

My heart goes out to you tremendously. I was in the middle of a root canal when this happened and we just found out my husband lost his job of 20 years and soon we won’t even have any insurance. I was told it will take 2 YEARS for me to get medicaid! I have all but given up. No one cares we suffer. No one helps if you become homeless (we were for 5 weeks).No one does anything that makes a difference all they do is spend our hard earned money and now its all up in smoke. We may lose our home because of this. God is our only saving grace right now in my family.

JaneF

Ellen, you are an inspiration, as life keeps throwing rocks and boulders in your path, you continue to be hopeful and patient. It’s not an easy path, but it’s what is given, for the present. Stressing does not help, but we all have our personal limits, so strive to do what you can to help yourself. * Thomas Kidd, if you Dr. indicated he sent in an electronic script, maybe, check with the pharmacy, as most Doctors are not seeing patients.* I pray it works out for you, as I was in a panic last time I was at the end of my script. I pray for all of us, pain warriors, keep up the good fight, hopefully, we will get through this and be better for the battles.

Shane Schwartz

Hang in there my dear friend.. brighter skies are coming. It’s tough now but we will make it thru this. Keep the Faith friend.

Sincerely,
Shane S.

Maureen M.

HI Ellen, yup, we are all missing our doctor and therapy appts. Although, my pain doc did Telehealth for the 1st time this week and then faxed my script in to the pharmacy, also for the 1st time. He said we will most likely do the same in May.
I have not had my ‘spine therapy’ appts in almost 2 mths now and my body is negatively being effected for sure!
But, I remain hopeful that while the medical community is trying to figure this all out over time, that they will find a way to actually see patients very soon!
Things like yours and your husbands ear issue should be taken care of ASAP though!
I think it all depends on where you live and the urgency.
Other important things like annual mammograms are still being done here by me, so I think Doc offices need to start figuring it all out before folks snowball into added issues fast.
Hang in there and keep safe.

Stacy A Cooper

I’ve been saying this for days when my state Governor says he won’t even give a possible date. But it seems our fellow pain warriors disagree and want everyone to stay at home indefinitely. There will be a lot more people die if we continue to pretend like we can really stop death just by staying home. How many of us are in worse pain and in more of a depressed state?

Thomas Wayne Kidd

I have tried to contact my clinic, but cannot get them to answer me. Anyone have any ideas?

Thomas Wayne Kidd

I saw my doctor last Friday and received my appointment yesterday. The instructions on it are very disturbing. Not sure that I will get my prescriptions he sent to my drug store electronically. If he has cut me off I guess I will just have to find another clinic or wait for death to come.i
I have been taking Methadone daily for30+ years and don’t think I can survive another withdrawal. Any and all who knows the power of prayer please pray for me. I am hoping that I misread the instructions.

Joan Alba

Your pain and medical problems are just as important as anyone else’s. Your first disclaimer was enough. We suffer too much every day in our normal or not so normal lives. You are important and your feelings and pains are valid. I see too many people putting down their pain and suffering because it could be worse, or it could be coronavirus and I or someone close to me could have died. All this is real and tragic, but it doesn’t make your ears not get any worse, i was able to reschedule my ear appointment for August. So i guess my point is that we should not have to put a disclaimer on our comments about medical problems or pain. It is all valid and in our own chronic illness worlds it is the most important thing for us to deal with. Hope you get all your appointments soon and this all fades to z Minor nuisance that a trip to the drug store can help.
Joan

Jeanie Rhodes

As always, Ellen Lennox Smith has written another great article for those of us who are pain warriors.

We are most grateful for her insights as well as her expressing her challenges so precisely.

We look forward to one next we hear from her!

BarbaraDH54

I can sympathize. At the beginning of February, I had a new disc rupture in my lumbar spine. The visit to a NP under my orthopedic surgeon proved beyond frustrating. She was angry at me because I refused a steroid injection, something contraindicated in EDS. She also thought I was being “difficult” because I was unable to keep my left leg extended to get a good xray. She wanted to order a new MRI, but told me it would be impossible to get if I couldn’t even hold position for an xray. My suggestion of either extra pain medication, muscle relaxants, or sedation, all were dismissed. Her report of the visit contained largely false information, and after discussion with my orthopedic surgeon thru the patient portal, I was finally set up to see a spine doctor knowledgeable about EDS. Then the virus became our current reality. That visit ended up being cancelled, as well as my appointment with my POTS doctor, my neurologist, a headache specialist (finally, for my headache I’ve had for 6 years), and finally my scheduled cataract surgery the end of March.
It’s true that none of these things are life-threatening, but for a 65 year old woman, widowed & disabled & living alone, all are most definitely necessary to ensure that I can function well enough to continue caring for myself and living independently. I also had an appointment scheduled with my new PCP that had to be cancelled, and last night I broke my upper denture (thankfully I have a spare, but it has never fit well). Add to all of this the fact that my pain is being grossly under treated, and you could say that I’m not a happy woman right now.
It would be nice to believe that our society, due to the shelter in place order for the virus, might end up being more understanding and accommodating towards the chronic illness community after all of this is over. I remain hopeful…
I’m just excited right now that UPS delivered my back-ordered (2 months) paper towels from Amazon!

Teresa Ingebrigtsen

Ellen,
I am so sorry. I do understand. Right now, more than usual, I feel like no one really cares. Because I have mental illness as well as pain issues related to disc issues in my neck, I have a hard time convincing my doctor to take me seriously any how. I have always seen my mental health team regularly and I take my medication as I’m supposed to, I have been stable, or relatively so for a good while. Yet, he still writes me off as a nut case. I havent been able to get an appointment but I did speak to him, I cannot live with this amount of pain, I have been telling him for well over a year that something is wrong, I have lost 50 pounds in 15 months, I have a lump in my throat, my pain is more than i can take. He ordered a CT scan of my neck, my thyroid is enlarged, now i have an MRI on Monday. So we’ll see. I will be changing primary care when this is over. I miss my acupuncturist, he is the best. Take care, stay well, keep the faith, fight for what you can.
Teresa