Chronic Illness and Living

[LoriASoCal]

I’m feeling isolated even amongst my comrades here. Somewhat like a war casualty while the rest of you do battle on. We all suffer varying degrees of this disease, but we all do suffer. This disease, with all its’ myriad of problems, life and its’ extenuating circumstances, has left me feeling this way.

What I thought were hives, after much investigation is not. It’s disseminating shingles. I’ve had shingles twice in 13 months. I have PHN (Post Herpatic Neuralgia) in both regions. Which is not so rare among people who are compromised But now this new disseminating shingles thing, can affect my organs and may have already. I’ve had some kidney problems and my kidneys are my Achilles heal (hmm, well you know what I mean even with the silly analogy) I want to think it is all behind me but I woke up with a few more “hives”. I see my rheumy on Monday. Thank goodness. I’m sure he’ll help me figure things out.

Also, I have a new swollen knuckle not that that’s a huge deal, but it’s like looking down and watching another piece of you fall apart. Fortunately, I get my remicade infusion in 2 days.

I don’t want to feel alone. I know I’m not really. We all struggle even those of us with no apparent disease struggle because life itself is a difficult journey and our bodies are designed to become withered, diseased and eventually die. I’ve lived a good long time. I have two beautiful daughters, a granddaughter and some very special people in my life. I’m extremely fortunate. I haven’t been so stopped short in my tracks to say I haven’t had a full and wonderful life. My doctors helped me achieve that, helped me get my kids raised and continue to keep patching me up some how. I hope they don’t get frustrated and give up.

[TheOne1313]

The only thing I can say is dont give up hope. Your not alone. I know at times it may feel like you are (believe me ive been down that road as well all too many times), but it seems like you got a great family and you definitely got alota great people here that also know what your going through. Just continue to be strong and live everyday to the fullest you can live it.

[tmartha]

Good morning, Lori- how discouraging and awful to find out that your 'hives' are shingles, and for the second time, too. I'm sorry you feel alone...and you're right, you're not really, and you're also not alone in feeling alone. I think it's one of the worst byproducts of having a chronic disease.

Some days you can battle, and some days, you just can't. To have this crummy, evil disease set such huge limitations on a person at such an early age (ANY AGE) is just plain hard to deal with in itself, then add in chronic pain, then add in complications thereof...of course some days we can't face another battle. But I hope you don't feel like a casualty for long. Someone in another thread with p but no pa mentioned something about fending off the 'pa monster' - and it is all of that to me. Just have to keep switching up our weapons, sharpening our tools, and if you ever do feel that your doctors are giving up - find other ones!

It's great that you have such special family and loved ones in your life, and even greater that you have the heart to really appreciate that...

What is post herpatic neuralgia? Good thing you see your rheumy in less than a week, and remicade dose soon...
Best wishes, best of luck,
Tani

[patti2957]

Your posts have cheered me and comforted me many times. Some of my favorite people are friends I've met here; as I said to one, the commonalities of living with this chronic illness far exceed any differences in geography, lifestyle, etc. Now I better understand the support of being in AA; I do wish sometimes, though, that we weren't always communicating via writing - a hug never hurts now and then:)
Last I recall, you were looking for a job. How is that going?
patti

[Ihurt]

[
I don’t want to feel alone. I know I’m not really. We all struggle even those of us with no apparent disease struggle because life itself is a difficult journey and our bodies are designed to become withered, diseased and eventually die. I’ve lived a good long time.


Im not a grandmother yet (smile), but I too look at it the same way-like "if the worst is starting to happen, at least I've lived a good long portion of my life, and my kids are happy and healthy".

Living with this disease, then having it compounded by the complications like shingles can be devastating all in and of itself,. The depression that results from the flares we constantly deal with is like none other, and remember we always flare in the last few days before the next infusion! Your feeling that your all alone is a common one for us all, butbe rest assured, you are NEVER alone in this group, and you are needed here. I have read many of your posts and have found great comfort in the things you write.

What we deal with minute by m9inute, day by day, month by month, etc is more than a plateful and is bound to get us down no matter how hard we try. Im learning that I have to ridethe waves instead of trying to avoid them-they are gonna come just as the ocean moves-its part of the cards we were dealt. The difference is, I don't have to do it alone, and neither do you-we are all here for you-NO MATTER WHAT. I hope and pray that your infusion helps you to feel better really soon and that the shingles receed and don't come back-chin up Lori.

Elaine

[jdgarwood]

One thing that I always try to remember is, just when you think that you've reached your lowest point, that's when things somehow start to turn around. I had a very bad time with my PA last year, so bad that I became so depressed and felt so isolated that I didn't want to get out of bed in the morning. I was going from medication to medication and nothing was working for me. Finally, I broke down and talked to my regular doc about my feelings of hopelessness. He started me on 20mg a day of Prozac, which, up until that point, I wouldn't even consider.....long story short...I truly believe that he saved my life. I was in a dark place for a long time...all because of my medical condition. Within a few weeks, the clouds lifted, my Enbrel started to work, and I'm happier than I've been in years....something that I couldn't imagine just a few short months ago. Hang in there...you have so much to be thankful for...we all do. I wish you luck with your current bout with the shingles. Take each day one at a time....I never use to do that, but I do now, and I'm much happier. Best wishes.

Joel

[LoriASoCal]

You guys are great!! Thanks for the kind and thoughtful words. They touched me.

*Post Herpatic Neuralgia is extremely painful nerve damage from the reactivated chicken pox(Shingles) burning through our circuitry and basically leaving it ruined and smoking. Sometimes it reroutes quickly and other times it takes months or years if ever to heal. Until the nerve path reroutes, it's a pain, literally. The older you are and the worse your health, the harder it is to recover from. What it feels like to me is that my ribs are in a vice and someone keeps tightening the vice. Now I have that same vice feeling in my face. It is one of the most painful things, I know.

**The job is going well. I'm working 4 hours a day, it isn't too stressful.. but not having money is very stressful.

***I filed my taxes but apparently I underpayed in 2002 and now, they took my whole return, accept 50 dollars, to pay the underpaid taxes for 2002. It really bites. I didn't even know my taxes were an issue. I had that money allocated towards paying my car insurance. So it's stuff like this that really affects me a bunch. I don't know if I'll ever get out of it long enough to get the peace of mind I need to get well.

But it still is true, no matter what happens, I know people care about what happens.

Lori

[Kimbercat]

Lori,

You've certainly had more than your share of roadblocks thrown your way. :( I keep hoping that life will turn around for you....you deserve some peace and physical and mental relief. You'll never be alone as long as you come here and reach out. Many of us care about you, and some even have the same problems that you have had. It just makes it tougher when so much is thrown your way at one time. I hope you found some answers today at your rheumy appt. Please let us know how it went. It seems like there are some folks here that just have so much thrown at them all at once. For many, it makes you a stronger person, and I admire your strength and fortitude for continuing the battle. You're truly an inspiration to some of the rest of us who don't have it quite as difficult, so please don't forget that. :o