I am so humbled just by reading this thread and everyone that is struggling in one way or another. Puts things int o perspective. I applaud you all for the grace in which you conduct yourselves and keep on going with such extraordinary fortitude.
I wasn't going to post this but a friend directed me to this page after certain events happened on a thread in the accessories for apple watch forum. I wanted to share my story with those of you that know what its like to live with chronic pain.
I for one, too deal with several illnesses. Some of which have no cure, and some of which have taken me out of things I loved to do like reviewing tech products on youtube.
When I was in the Marines I got diagnosed with Chronic Myeloid Leukemia so I had to get out. In a way I am grateful for having gotten sick for having not been, I would've never met my husband. My best friend and the father of our children.
Then, in 2010 after trying to conceive for nearly 5 years for our second baby we got the amazing surprise that we were expecting triplet. It was a hard pregnancy to say the least, with Hyperemesis, I lost nearly 60 pounds during my first trimester, and during labor at 34 weeks, only one of our 3 babies survived, and shortly after he was born I went in to cardiac arrest. Sent to the ICU for almost 4 months, having only seen my newborn baby, only for a week and consequently after coding in the ICU thrice, I was finally diagnosed with a host of illnesses that include Systemic Lupus Erythematosus, R.A, Fybromialgya, Raynauds, Sjogrens, Severe heart failure for which I had an eject fraction of less than 10%, and many other illnesses that follow after Lupus. I was told I wouldn't make it to the end of the year, and after I did, My ultimate prognosis was 5 years, 3 and half of which have come to pass.
This is the day I met my baby for the first time after I saw him only for 7 days after birth to not see him again until he was 3.5 months old.<3
View attachment 569655
I have been on chemo since I was diagnosed and a couple of days ago I was told that chemo isn't helping anymore so I am done with chemo and hoping to start a new drug that could potentially save my life but because the drug is more expensive than my car per little vial for which I need 4 a month, my family is now treating me like its the last time they'll see me for Tricare although the best insurance We have at home, has not approved and even after appealing, they continue to deny the approval of said drug which is called Acthar and it runs at almost $43K per 5ml vial.
Even then, I am a very optimistic person and I have gone through so much that at this point am more interest in quality than quantity. The only regret I have is not being able to see my children grow up if the inevitable happens.I do things my doctor believe is erratic, I know my body and thats why I push myself to live because I dont have to wait until things get bad to start enjoying the life I have in the now. I go kayaking, snowboarding, I'm an Archer, and hiking, trekking, backpacking, fishing, traveling, I continue to prove everyone that God has the last word.
There is more than 5 million people worldwide diagnosed with this terrible disease that is lupus and as of now there is still no cure to be found. The saddest thing of it all is that with medications priced so high, makes it impossible for many to survive, since they can't afford such treatments.
Anyhow, if it wasn't for this illness, I wouldn't be the happy woman I consider myself to be. Not lucky for I have worked my @$$ off to be where I am, but I am indeed very blessed for having an amazing support system in my husband and the small circle of people that know my struggle and they know that I am not okay, even when they ask if I am to which I reply I am doing fantastic. Why? Because, the illnesses I am diagnosed with don't define me but how I choose to deal with them does. I refuse to let this disease that is lupus take control of my life, and as such I also make the best out of the circumstances. The sky may look grim sometimes, but one thing for certain is that above those gray clouds, there's a sun that is always shinning and sooner rather than later, clouds will break allowing the sunshine to get through.
It isn't the disease but how you face it that makes you or breaks you, and I choose to let it only do one thing for me, and that is to smile through adversity because I only have this life, and I don't care that I am dying. I care more for the moments when I am alive enjoying every single breath, the warmth of my husband's kiss on my lips, and the sweet voice of my boys when they call me Mom. Those things alone are worth fighting, and they are why I continue to fight. Don't ask me how I do it. The question is actually why I do it, and the answer is my family.
Much like all of you, I refuse to give up. So I keep on hiking up this mountain and it gets hard, because the pain never goes away, but I know that at the end at the summit a fantastic view awaits and that alone is the reward for all the pain and suffering I've been through.
I also have 2 angels watching over me from above. Life doesn't get better than it is right now, where I chose to say in the mornings Thank you Lord for another breath of oxygen filling my lungs, blood running through my veins, and the heart beat that skips every time I see my children smile, and even the beautiful view each morning when I wake to my husband staring at me saying he wants to soak in every moment of me even when I sleep, worry-less about what the future holds for us but one thing is for certain is that we are doing this together and that i something that will never change and Lupus nor any other illness will ever take away from me. I live for the little moments of happiness and that alone is worth putting up the fight I continue to give every day.
I wish you all health a plenty, love till your heart burst with happiness and many years ahead to enjoy around those who love and cherish you for as long as your bodies allow you, keeping in mind, you were given this life because you're strong enough to live it.
Wow! You have been through a lot! First, I have so much respect and admiration for how you are dealing with your situation. You have a lot of courage and tenacity! Autoimmune diseases, especially lupus are rough. I'm so sorry to hear all that your going through, but I think you have the right idea, no one makes it through life unscathed in one way or another. It might be physical, mental, social, economic, etc. No one has a perfect life, all we can do is make the best of what we have.
I work in healthcare and share your pain with the cost. It's absolutely mind blowing how expensive some of these drugs are. To make it worse, drug shortages are rampant, especially in the cancer realm. I'm so sorry that this is inhibiting your treatment. Keep pushing, that's all you can do.
You have a beautiful family! Something I hope I can achieve one day.
I haven't posted in this thread but sympathize and empathize with everyone suffering. I have somewhat of a tarnished medical record.
- When I was 4-5 years old I was diagnosed with ALL, the most common childhood cancer, which is a type of leukemia. It's very treatable, and I have made a full recovery. Someday I plan on starting a family, but I have always worried this may not be possible due to the long term effects of chemo on adolescents.
- When I was 17 I received a spinal injury. As a result I have nerve damage. I have lived in constant back pain for over 7 years. For about years my athletic life dwindled (college sports ended after my freshman year), I was agitated/depressed, etc. Doctors have told me I'd be in pain for the rest of my life, that it would only get worse, and that narcotics should be integral in my treatment. I currently taken 0 meds and exercise (yoga + swimming). I have good days and bad but the pain is manageable and really inconsequential these days.
- When I was 23 my 26 year old brother unexpectedly died. This was very depressing, as it was just another problem in a very problematic couple month period. The benefit that came out of this was I was able to identifiy some long term depression and axiety I had never addressed.
- I've had a handful of weird medical issues pop up, probably due to chemo. One of these is a "leaky" blood brain barrier- which basically means more of a drug than expected will enter my brain. This was realized 2 years ago. I have to be very careful taking anticholinergic drugs. A couple years ago I was in a delirium for about 2 weeks before I started hallucinating and finally realized there was a problem. Faces on the ceiling and tree frogs in my shower isn't normal. Delirium sneaks up on you and explained why I kept getting lost in my own neighborhood. By the time I got to the doctor, I couldn't remember my docs name, the year, a series of more than 2 words, etc. I couldn't remember words and would unknowingly say things in Hebrew, in which I'm also fluent, thinking it was English. So yes, no more Benadryl for me. Good thing I wasn't working at the time!
- Oak and Birch pollen allergies
