I just need to ask this..those of you with or have had severe medical conditions

[dancer67]

How do you cope when you have been handed a devastating medical diagnosis? Whether life threatening or chronic?

 

How do you stop yourself from being paralyzed in fear?

 

And is this something you think about every.single. minute of the day?

 

I need to get a handle on coping skills, and although I am not in this position, I have been in situations when things were "thought" to be potentially serious. I was literally sick with fear until I was told all was okay.

 

No matter what I did, I couldn't even function until I was told I was ok.

 

I cannot even imagine how I am going to react if I am told I have something serious.

 

:grouphug: to all

[Impish]

I don't know.

 

Hows that for honest?

 

I was dx'd with RSD almost 3 yrs ago now. And I still haven't completely wrapped my head around this being forever and ever amen.

 

I deal a day at a time. An hour at a time. A minute at a time.

[KristinaBreece]

I go into management mode. I focus on the aspect of my disorder that I can control, and that takes a bit of the stress out of ALLL of the stuff that I can't control. Every once in a while, something will happen to remind me that I can't control it all & that something could go wrong anyway-- but I try to just deal with the positive. One step at a time.

[Hedgehog]

How do you cope when you have been handed a devastating medical diagnosis? Whether life threatening or chronic?

 

How do you stop yourself from being paralyzed in fear?

 

And is this something you think about every.single. minute of the day?

 

I need to get a handle on coping skills, and although I am not in this position, I have been in situations when things were "thought" to be potentially serious. I was literally sick with fear until I was told all was okay.

 

No matter what I did, I couldn't even function until I was told I was ok.

 

I cannot even imagine how I am going to react if I am told I have something serious.

 

:grouphug: to all

 

Were you paralyzed with fear because you were convinced that you were really ill, or because you didn't know what was wrong?

 

For me, having an answer makes all the difference in the world. I've spent 16 years being on and off exhausted, sleeping badly, randomly waking up feeling as if I hadn't actually had any sleep at all, aching all over, shaking for no reason and a bunch of other symptoms that would take too long to describe and the worst thing about it has been that no-one has ever given me a reason for why I am like this. A week or so ago I finally saw a doctor who gave me my answer - Chronic Fatigue Syndrome.

 

I had suspected it, but it doesn't seem valid - and people don't really take you seriously - until you actually have a diagnosis from a doctor. For years I was afraid of it being CFS, but because I didn't have it confirmed I sought other reasons for my problems - I was stressed, my hormones were out of whack, I was pg, I was breastfeeding, etc. etc.

 

So now, rather than putting my symptoms down to everything else under the sun, I can actually relax knowing that it's okay, it's just part of what I have, this CFS thing. It will probably never go away, but my mind is at rest from the constant seeking of reasons, and I can get on with coping with it in a constructive framework - validation, CFS clinic, support groups.

 

Does that makes sense?

[Ottakee]

I had a life threatening heart condition that was repaired when I was young so likely that doesn't count.

 

My girls both have chronic medical issues---one has 2 and the other 3 mitochondrial disorders. Right now they are stable but these are degenerative things so we do a lot of monitoring of heart, liver, kidneys, brain, optic nerve, etc.

 

Honestly, once we KNEW what it was, it is easier than the not knowing, we aren't sure, is this or is this not serious, etc. I think the unknown was harder than the known.

 

I think too that there is a grieving process that you go through--denial, anger, etc. and then acceptance (and the cycle can repeat or go back and forth at times).

[dancer67]

Thank you for sharing and :grouphug: to you.

 

For me, the paralyzing fear was that I was in pain, and I didn't have any answers. That was one time.I could't imagine being in that pain for the rest of my life. Another time, there was a mass found on my kidney during a CT Scan for a kidney stone. I was paralyzed in fear for 3 weeks until I had an IVP CT Scan.(It was an accessory spleen so everything was okay).

But I wonder how I would really react if I recieved news of a devastating illness.

 

I read so many stories on here, and not sure if it is just a front, but I am amazed at how well some of you handle your illness.

 

again:grouphug: to all of you who are struggling.

[Margo out of lurking]

I am not speaking strictly for myself, but for dh and I as a couple. He was diagnosed with MS several years ago.

 

How do you cope when you have been handed a devastating medical diagnosis? Whether life threatening or chronic?

 

How do you stop yourself from being paralyzed in fear?

The diagnosis was surreal and completely unexpected. We went through the "at least" thoughts: at least it wasn't __________ (something worse); at least it wasn't one of our kids; at least it wasn't going to kill him. We believed that God had brought us to a certain place in our relationship with Him to prepare us for this, and that was hugely comforting.

 

And is this something you think about every.single. minute of the day?

I don't; dh has struggled with ever increasing discomfort, but he does not focus on "I have this."

 

I need to get a handle on coping skills, and although I am not in this position, I have been in situations when things were "thought" to be potentially serious. I was literally sick with fear until I was told all was okay.

 

No matter what I did, I couldn't even function until I was told I was ok.

 

I cannot even imagine how I am going to react if I am told I have something serious.

 

It's part of life. You get through it (or not, honestly). Life goes on; it's not what we planned, but it doesn't mean that everything is now horrible or awful. Worrying about it until one is sick with fear is not going to change the outcome, but it might make the journey much more difficult. We've made an effort to minimize how it affects our kids, and a significant part of that comes from our attitudes about it. I am thankful they have their dad. Not all kids can say that.

:grouphug: to all

[Denisemomof4]

about 8 years ago I was convinced I had MS. I went to two neurologists who were COMPLETELY useless. What a surprise. The more I read, the more I was convinced I had MS. My arms would tingle and go numb, I lost the use of my hands for periods of time, I lost feeling in my legs, I saw black crawling things, I had weird sensations on all my limbs. I was told I had a neurological "fluke." :001_huh: I never really took the time to panic, even though my kids were very young at the time and I was going through the adoption process. I went into overdrive researching MS and natural treatments/diet. I went on a strict paleolithic diet and slowly but surely the symptoms I had, which were relapsing and remitting , one time with a year and a half break in the symptoms. I ate my strict diet, took sup vitamins, and eventually all my symptoms disappeared. I followed the recommendations from a man who was confined to a wheelchair but reversed his MS.

 

So, although I never got a diagnosis, I had to do my research to try to diagnose myself, then went int high gear researching it all so I could help myself.

[Impish]

I read so many stories on here, and not sure if it is just a front, but I am amazed at how well some of you handle your illness.

 

again:grouphug: to all of you who are struggling.

Honestly, some of it IS a front. Fake it til you make it.

 

More often, its simply about lack of options. I *can't* curl into a fetal position under my desk. I have a husband and children that need me to be the best I can be, in spite of RSD. Somedays, that doesn't add up to diddly...but I'm in there trying.

 

In fact, I had a heck of a compliment from Wolf during the medical panel.

 

They asked how my moods are. I turned to him and said, "How would you say it? Like living with PMS 24/7?"

 

He became very serious and told them that he didn't know how on earth I cope as well as I do, how I manage to keep it together, keep being a loving wife and mother, b/c if it was him, he would have laid down in front of a bus long ago.

 

I'm trying. I've given serious consideration to leaving my family, so that Wolf could find someone whose healthy and whole to fulfill the wife and mother role...but I couldn't help but think that abandoning them would be far worse, more traumatic, more devestating than dealing with a mom with RSD.

 

I don't know how I'd cope with out my family. They are my reason for everything.

[KristinaBreece]

 

I'm trying. I've given serious consideration to leaving my family, so that Wolf could find someone whose healthy and whole to fulfill the wife and mother role...but I couldn't help but think that abandoning them would be far worse, more traumatic, more devestating than dealing with a mom with RSD.

 

I don't know how I'd cope with out my family. They are my reason for everything.

 

 

 

:grouphug::grouphug:

 

Know that "RSD mom" trumps "left us mom" every day of the week. My grandmother was diagnosed with debilitating Rheumatoid Arthritis at 27, just after her 4th child was born. She struggled every. single. day of the next 37 years. We lost her last April, and I admire that woman more than I can even begin to express. Your DC will see your struggle, they will see your pain, and they will appreciate you all the more for it.

 

And, side note, "Fake it 'til you make it" = Best. Advice. Ever!

[Joker]

Until very recently I would have thought I would be paralyzed with fear and not know what to do. A family friend was just diagnosed with 4th stage esophageal cancer and he must be the strongest person ever because he is all smiles and wanting everyone to know how much he loves them. He is opting to do chemo because it gives him a few extra months to be with his young kids. I am in awe and hope that I could be just as strong. I think we find a way to function and overcome our fear.

[momofkhm]

How do you cope when you have been handed a devastating medical diagnosis? Whether life threatening or chronic?

 

How do you stop yourself from being paralyzed in fear?

 

And is this something you think about every.single. minute of the day?

 

Not my diagnosis, but dh's. He has a kidney disease that will eventually cause kidney failure, in 15-25 years. The day to day stuff it's changed are not things anyone outside of the family would ever see. But he's more tired. He goes to bed early. I've had to get used to being the last one up at night and the first one up in the morning. But he still rides his bike an hour a day for exercise. Like I said, outside the family, you'd never know.

 

I was never paralyzed with fear because we're looking at 15-25 years! But it was an adjustment. Some of it was just time passing. Some of it is there is absolutely nothing I can do. But even now, I think about it sometimes but not a lot. I'd say I devote 0.001% of my time each week to thinking about him and his disease. What my kids are doing for sports in the fall gets more time.

[Mommyfaithe]

Mostly, I stay in denial. How is that for an answer. I get reminded every 2 hours or so, when my phone alarm reminds me it is time for meds....

 

Faithe

[Mejane]

Honestly? It just p*sses me off. Mine, arthritis, is not life-threatening, but it's life-altering.

 

I push myself when I feel so achy just want to stay in bed. I research to find what's new. I take extra good care of myself so I can stay as strong as possible. I refuse to feel sorry for myself or burden other people; everyone's got something. If I'm going to have a pity party, I do it alone.

 

But, yeah, feeling myself going downhill at 50 p*sses me off, and if you p*ss me off watch out. So watch out, arthritis! :boxing_smiley:

[CalicoKat]

I diagram sentances in my dreams, in FRENCH, all night long. . . . . . . .

 

That's when I get a clue that I'm not coping well and take the day off and knit something.

[Melinda]

How do you cope when you have been handed a devastating medical diagnosis? Whether life threatening or chronic?

 

How do you stop yourself from being paralyzed in fear?

 

And is this something you think about every.single. minute of the day?

 

I need to get a handle on coping skills, and although I am not in this position, I have been in situations when things were "thought" to be potentially serious. I was literally sick with fear until I was told all was okay.

 

No matter what I did, I couldn't even function until I was told I was ok.

 

I cannot even imagine how I am going to react if I am told I have something serious.

 

:grouphug: to all

 

I have a few blood clotting disorders and a couple other issues, and have been incorrectly diagnosed with a whole bunch of stuff -- I would go to one specialist and they would tell me I had these 3 ultra rare, degenerative and/or terminal issues, and then a few weeks or months later go to another specialist who would say the first was wrong and I had these other 7 things wrong with me.

 

I started getting severe/life-threatening clots when my second child was 4 months old (she is almost 7 now, so 6 1/2 years -- a few days after my 24th birthday). It has taken until maybe 6 months ago to finally figure out what is going on with me. As much as I am grateful to live about an hour from places like Johns Hopkins, this experience has taught me that doctors do not know everything (I used to be somebody who would do what the Dr. said without question. Now I question everything and do my own research)

 

It has been a crazy and intense time for us as a family. My issues (not sure what else to call them) have been very hard on my marriage.

 

For a long time I was paralyzed in fear, as was my husband. That has dissipated over time, but is definitely still there. However, we have chosen to live for now and prepare for later but not live in fear. The medical problems I have and have had are actually one of the reasons we homeschool.

 

This is not something I think about every second of the day, but it does affect the choices I am able to make. For instance, I get venous stasis ulcers (I don't have the right circulation in my leg and my valves don't close like they should when my heart pumps so I end up with large and painful holes in my lower calf -- gross, I know). Since I have these painful wounds, it makes it so I am not able to walk very far (hard on me because I used to be a soccer player and very athletic) so I am not usually able to do things like hike with my family. If I do choose to hike or go to the zoo, it takes me a few days of resting with my feet elevated to attempt something else. This is the part that gets to me...I feel like my children do not get to do as much as I would like them to or that they should get to because of me. That is by far the hardest part of this.

 

If you would like to talk more, please feel free to send me a message. :)

[prairiewindmomma]

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Edited November 10, 2021 by prairiewindmomma

[dancer67]

this experience has taught me that doctors do not know everything (I used to be somebody who would do what the Dr. said without question. Now I question everything and do my own research)

 

 

 

 

This.

 

I really think I have PTSD from a bad experience 4 years ago. Long story, but the short of it is that I have IBS. Yet, I was in so much pain, lost SO much weight in 2 months(154 down to 120) because my pelvic area hurt so bad, NOBODY could tell me what was going on. So many hands in the pot, and every Dr with a different DX. Let's see, I was told I had interstitial cys****, a rupturing ovarian cyst, a UTI, possibility of Colon Cancer,then the almighty "It is all in your head" and no matter what anyone did for me, that pain would not go away. It robbed me of my life for over two months. I wanted my life back so badly. I couldn't imagine living with that kind of pain for the rest of my life. I was angry.

It was by a fluke that the GI's NP told me that I probably had stress induced IBS. Again, I was hesitant and didn't believe her because I had no symptoms of IBS other then the pelvic pain. Well, she was right. She gave me a prescription and I have been pain free now for 4 years.

Now, when something is going on with me, especially pain of any kind, it takes me back to those days, of waiting on Dr's appt's, not trusting their DX, living in pain until they do find out what is going on with me. Although has not happened yet, I fear that it will happen again.

Google is not my friend. If I google, it has me dead in 6 months. So I tend to try and stay away from the internet trying to diagnose myself. Hard not to though, because that trust issue comes in with the Dr's.

 

I just think that I would be angry again. I do not want my life to change and be stripped away. Where I see everyone else carry on with no pain, and no medical problems, and I am dealing with something everyday of my life. Doesn't that anger you????

 

I know we have to accept at some point what is handed to us. We have no choice. And nobody said life would be easy. I guess I am selfish in that way that I want to live my life with no serious medical bumps along the way. I know, sounds irrational.

 

Many of you have some serious long term issues going on. And I commend those of you who have been dealing with this and trying to be strong.

 

And, lastly thank you for sharing your stories with me. I will be praying for healing for all.:grouphug:

[dancer67]

In many ways, the days after my dd was diagnosed with terminal cancer were a lot harder than her end of life/burial days.

 

 

I am so very sorry.:grouphug:

[Oops, duplicate account :/]

I've become closer to God and become a stronger person (no, honey, I won't be having anymore children until I can take care of the ones we have now) and have given up expecting anything from anyone which had been very freeing. Ppl just dont get it.