I'm still sick.
I'm so frustrated with my life
I am so sick of being sick
So sick of feeling, being sick all the time
So sick of trying to avoid being sick
Then getting sick anyway
Yes I'm very grateful for so many many things.
Yes I am still an optimist and I have a lot to be thankful for
Yes I am strong, a survivor, a cancer warrior, and so aware that I am better off than so many many many
Yes, I know, I really do know, how "lucky" I am.... blah blah blah...
But I am very frustrated with MY life
My life right now.
Sorry to offend, sorry to whine, sorry to feel so pitiful, sorry to sound so ungrateful for all that I do have going for me...
But I am so very frustrated with MY life.
My stolen life.
It's now been 3 weeks being sick.
I am better than a week ago, and a week before that.
I am a little better each day, but I'm still sick.
Sick for more than 3 weeks.
I am so frustrated with MY life.
My stolen life...
It started with a horrible sore throat. Just horrible.
Then the fever for 2 days. Just awful. I felt just awful. I cried.
Then the nose, the head congestion.
Then the cough. The never ending, never relenting cough.
Coughing all night long. Choking, hacking, all night long. Still.
This bug is relentless.
Yes, all this is physiologically "good". Good that it is draining out.
Yes, this is the process of illness.
Yes I am grateful my body is doing what it should do to get well.
But sooooooo slowly, so dramatic each day. Little relief each day.
Yes this represents my lame, immune compromised body trying to fight off the evil invaders.
Yes my weak immune system is rallying. Yes I am getting better a little bit each day.
Yes all the congestion, coughing, etc, is clearing out all the cooties. Slowly.
Yes I know the biological process of a headcold, of this gross sinus infection.
No I don't have patience for the process
I've run out of patience
Cancer treatments and side effects teach patience
But I am impatient.
I don't want to learn more patience.
Dang it, 3 weeks is a long time to feel continually sick. Just sick.
Dragging, blah, weak, tired, defeated, deflated, yucky, clogged, stuffed, drained and draining.
My ears have been so plugged for days and days, I feel like I have cotton stuffed in them, or I'm under water.
Yes I am very very very fortunate I can battle on my own.
Without antibiotics, with just OTC help
Without getting seriously ill with pneumonia and winding up in the hospital.
Yes I should be proud of my feeble body for rallying as it does, and healing as it does, albeit sloooow.
Yes I am so aware of those that cannot battle on their own
So aware most myeloma patients, chemo patients wind up in the hospital with pneumonia in cases like this.
I am aware how bad "it could be", and No, I will never forget my month long hospitalization for my stem cell transplant process and recovery.
I am very fortunate I haven't been back in the hospital since July 2010.
Yes I am very very aware of how much suffering there is, and how bad it could be for me...
|Kathy Boyer, Artist-Photographer Extraordinaire|
But I'm really really really frustrated with MY life.
Am I living or just existing?
So sick of being sick.
So sick of trying to avoid being sick, then getting sick!
So sick of postponing my life.
So sick of seeing my life go by, day by day, just waiting.
Waiting to be well to live life
Hoping for a break
Hoping to feel well enough to catch a break, to have a bit of fun
Hoping, waiting, wondering, not in control.
Oh, shut up Julie, you have a "great" life.
You've beaten Myeloma for 8 years now.
You have so many things to be thankful and grateful for
Yes Yes Yes
I know I know I know
So many many many things to be grateful for and I am...
I truly am...
But dang it, I am so frustrated that my life was stolen from me 8 years ago, and it will be stolen from me forever, as my reality is I have a severely weakened immune system, I will never ever be normal, I cannot engage in normal activities. I get sick when exposed to any germs and cooties. Always. I have no immune system due to Myeloma's ravages and chemo treatment ravages. No one in my family is currently sick. Nor did they get this illness. We were all together at the time I believe I was exposed. They all have normal immune systems. They are healthy, I am not. I'm the only one who got sick. I tried to have a bit of carefree fun, and I paid dearly for it.
I have cancer, I am sick, I will be sick forever...
I'm so sad about MY life-
So sorry to be so honest, but I am so sad about what has happened to me.
My plans, my future ideas and goals... what a joke...
If one is not well, one cannot do what they plan, wish, dream about.
I really didn't have "big" plans, just a few little adventures
If I'm always sick, or feeling sick, or avoiding being sick, am I living life?
Yes I am beyond grateful to just be alive. Yes I am.
But why so much suffering, so often.
My ears have been so plugged. I feel like I'm living under water.
So much crud, gunk and phlem... but getting better each day...slowly, so slow, too slow
The cough isn't quite as deep any more
Thankfully, it wasn't ever bronchitis-deep or in my chest, just a relentless cough, my body trying to rid itself of the cooties. Thank you body for trying so hard. So tired from it all.
I am so sad for what has happened to MY life.
I could list all my frustrations, but I would sound so shallow.
I have so much to live for, and I do everyday.
But sickness, feeling sick, or debilitating fatigue, sabotages me.
I just can't get over how limited my life has become.
How illness, side effects, treatments, then more side effects own, rule my life.
My stolen life.
When I am "well", I still only have a day or so to "play"-
I'm either experiencing side effects or planning for them, from the medication crash.
Can you imagine planning each week, when you'll be "sick", when you might be able to be well?
Yes, illness is MY life, and I still cannot believe it.
Yes it can always be worse, and it is for so many.
The suffering in the world is overwhelming.
The suffering from illness is beyond anything I ever understood.
We empathize when we understand-
And I now understand how debilitating illness is.
I wish I didn't...
I wish I didn't have to learn all these lessons.
I wish I understood why this happened to me and others.
I wish for everyone's health, happiness, healing, no pain.
Guess I'm wishing for a non reality.
Life is challenges, pain, struggles, infinite mountains to surmount.
Honestly, I don't want any more mountains to climb.
I don't need any more challenges.
I don't want to be tested any more.
But I will be, forever and ever and ever, thank you Myeloma.
I just want peace, serenity, calm, beauty, laughs and lightness.
I just want to be.
To breathe calmly, to breathe in nature and beauty, and to laugh at, and with life.
I just want to own my own life again, but that's not possible.
Myeloma owns me and my body, forever...
I'll get through this, I will, I always do.
Thanks for reading if you got this far.
May your life be what you want it to be.
May you find laughter, happiness, peace, joy, and most of all... health.
Julie, I am sorry that you have been so sick! That has to be rough, being sick for so long. It saps my will to go on when I get really ill like that. I hope you feel better soon! I have been fortunate so far in that I really don't get sick very often. I don't know what the future will hold, so right now I am getting out there and doing everything that I can. Going hiking and going to concerts. I am going to Canada for an 8 day backpacking trip with my oldest son at the beginning of June. I will be off Pomalyst for 2 weeks instead of 1, so that my immune system isn't as compromised. So far, the Pomalyst has made my M-spike stable at .3, but my kappa light chains are going up. 15 something last lab, and 23 something at my labs last week. I am worried, but try to just live and not think about it. Anyway, I hope you get well soon, and I hope that they find a way to cure this horrible disease! Hopefully during our lifetimes!ReplyDelete
Hi Scott, I'm so happy to read your update and that you are able to get out and about and have FUN! From your stats, we have a different type of myeloma, and from what I've experienced and read, my IgA type really sabotages the immune system, whereas your Light Chain type isn't quite as affected, thank goodness for you!! Most other MM-ers I know with Light Chain MM, don't have the compromised immune system and low low WBCs like me :(( So happy you and your son will be travelling to Canada. What part? Back back back in the day I used to backpack also. Did some packing trips in Yosemite and Hawaii. Ahhh, the good ol days! Glad Pom keeps your MM stable! Thanks for checking in and updating me, and thankfully today, I am finally better. I think I'll write a quick update post. Stay well, and keep adventuring!!!Delete
Julie,Sorry you have not been feeling well!I can understand with your love of the outdoors how frustrating this must be for you.I was encouragedReplyDelete
though that your system is fighting illness so well.
A real compliment to your survivor mentality.Keep
your smile and your positive spirit as I know you will.
Hi Ron, thanks for checking in! Yes, being sick is terribly frustrating for me, as you said, because I love being outside and active. So very frustrating for me to be a sickie, in so many ways. But today, I am finally seeing a change, and I'm on the upswing :)) Hoping you're out and about playing with your grandkids, golfing and enjoying life!Delete