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this condition overwhelms me (Read 7212 times)
Godsgal
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this condition overwhelms me
06/16/11 at 01:35:35
 
Hi all, I feel so overwhelmed by this condition.  Some days I wonder if this is even what I have even though I know it is.  This condition came on me so suddenly.  I mean like a giant bomb went off and all the mess from it hasn't gotten cleaned up.  I went from extremely healthy and able to do a lot to shortness of breath with minimal exertion, needing a wheelchair, and a whole new body with very limited abilities all in a day.  Does it really happen like this?

I'm very concerned about this Churg Strauss syndrome because of my breathing difficulties with very minimal exertion.  And I have high eosinophils but not high enough to be the eosinophilia.  

I'll have good days where I do okay....I do a lot of sitting but I'm able to do more.  And then it's that time of the month or I run into some chemicals somewhere unwittingly and I'm up all night chugging benadryl and unable to lift my arm for a glass of water.  What in the world?  I don't get it.  I don't go into shock like people on here.  I'm so thankful for that.  I just wonder if others on here are using wheelchairs and barely able to do at 30!  

I'm having a rough day and I know God will see me through it.   It's a constant struggle and my faith keeps me going.  But bad days knock me down hard and I cry and I just want to get better for my boys.     Cry

My current meds are Singulair 10 mg twice a day.  Zyrtec 5mg in the morning and 10 mg at night.  Midodrine 7.5 mg three times a day.   I know I was once considered under medicated on here.  Is that still the case?  
I know I have to go one med at a time very slowly.  I'm in the middle of moving and don't want to change my meds b/c of any potential reactions but I'm not doing so hot either way you look at it.  

I know when people first get POTS it's awful and it gets better as time goes on sometimes.  Is that the case with this condition too?  

Any help would be so graciously appreciated.  I'm struggling today....
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DeborahW, Founder
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Re: this condition overwhelms me
Reply #1 - 06/16/11 at 03:44:35
 
Hello. I am sorry that I don't remember your details regarding exactly what you are diagnosed with and who diagnosed you. If you have mast cell disease and have such extreme symptoms, then you are vastly undermedicated.  While we may get ill and incapacitated quickly, it doesn't stay that way forever if you do the work and get the right doctors and meds. Have you tried getting in to see one of the Boston doctors? One question which I often ask people to think of is this: if you are unhappy with your physical state, what are you willing to do to fix it? Just waiting for someone to come along and help is not going to work. Where do you see yourself in 10 years, and how are you going to get there?

Obviously you don't have the medical knowledge to fix the problem, but it is in your power to research and find the doctor who can help. You could try to get an appointment in Boston, arrange transportation, and see what happens. I know when you are feeling awful how hard it is to imagine doing that, but you just have to push past that and try because there is no reason to just accept your current state. You can and deserve to feel better and enjoy your life.
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Riverwn
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Re: this condition overwhelms me
Reply #2 - 06/16/11 at 05:17:16
 
Hi Jared Smiley
Sometimes I think the hardest thing about having this illness is what I left behind. I was a Nurse taking care of ill people in a triage trauma unit at night--and I had a great rep for curing their problems. I suddenly (I say suddenly but it was coming on for years, I just didnt connect the dots). got ill.. actually I WAS ill and got worse quicker at one point. I had to givr up my job and career and learn to live on disability.  Take about anger LOL... I was the caretaker NEEDING care! I railed against it and had to go through a time period of grieving.

Am I telling you it wont get any better?? No.. definitely not. You ARE under medicated and when you do feel better I worry you are trying to go back to your old activity levels--which can throw you right back into reacting.  

What Im trying to say is, Call Dr Afrin (hes your Dr right?) Ask what he thinks you should add--or add what feels best for you from experience and make sure you let your DR know whats going on. Youre going to have to find what your own specific activity boundaries are. That will change as you get more stable but dont try to force it to what you want, learn to read your bodys signals ok??

Remember that feeling of loss of control is why we are here. To help you gain control AND to be the shoulder for you whenever you need it. We love ya Smiley
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Ramona
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Lisa
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Re: this condition overwhelms me
Reply #3 - 06/16/11 at 05:55:06
 
Hi Jared,

I'm sorry you are still feeling so overwhelmed.  There are days when yes, this is part of how things go.  It's harder some days than others, unfortunately, especially when you are still trying to figure things out and your medicine regimine is not yet correct.  

I FULLY agree with Deb in that you are not properly medicated yet.  Your doses are not high enough or you would find that you would not be so easily overwhelmed by smells and the like.  Another thing is that this disease goes in waves in that some times you'll react more to certain things than at another time.  Allergies work like that in that you have "seasons" and then once the season is over, things improve.   I've found that there are seasons when I'll have more intestinal issues and then other seasons when that's fine and it's other issues like shock or anaphylaxis.  You have to learn not to get your emotions involved in this cause they will make the entire situation worse!

It's like working with children, Jared.  Parents must learn to be above the problem and not part of it.  The more you lose your patience with the symptoms and the more you get emotionally overwhelmed or impatient or upset, the more you will end up reacting because your emotions are involved in it all!  You've got to teach yourself NOT to get impatient or upset and just roll with it instead.  By doing this, you will not allow yourself to begin crying or having problems and they will not become involved then and part of the problem.    Easy for me to say, hard for you to follow, but this is how it is.

Remember, Jared, strong emotions are strong triggers and it's very important that you don't give into them.  You've got to instead, talk and reason yourself out of them!

For example:  when you begin feeling frustrated and sorry for yourself for not being able to do what you want to do - just plain house cleaning for example - you have a choice to make:   either you are going to feel sad and depressed and begin lamenting and crying over it, saying you are more work than worth, that you are causing more work than resolving it and then get all blue and depressed and then this makes you cry and with the crying, starts up the reacting and makes you feel ever sicker...; or you are going to say to yourself, "Look, I'm not having a good day, so I've got to keep it very low key, Oh well.  Since this is how it is today, what can I do that will not trigger me and make me worse?"

You see, Jared, you do have a choice - either you give in and lose control of your thoughts and feelings and this makes it all worse, or you are going decide to look at the situation in a practical sense and refuse to let your emotions and thoughts go down the wrong paths and try to see what is positive of the situation and make the best of it.  

These are the choices we all are faced with on a daily basis!  We make CHOICES of how we are going to work with any given situation all day long, every day.  Depending upon your choice and decision you are either going to go down the wrong path and make it all worse!

I had someone say to me the other day that one of the positive things about me is that I dont' complain - ever!  It's true!  What good will it do me to be complaining about my health problem?  Is it going to IMPROVE my situation any?  NOPE!!  In fact, it's only going to end up impacting upon my situation by giving me the wrong attitudes and feelings and this will in turn impact my entire health situation!   I'm no Pollyanna!  Far from it!  But I'm also not the kind of person who likes to throw personal pity parties for they don't help anything and only end up making it worse.

So, chin up!  Stiff upper lip!  NO TEARS!!  NO PITY PARTIES!!    Roll with the punches!  and learn to make lemonade from those lemons you've got there!!!

I am CONVINCED, Jared, that once your doctor is able to get you on a higher amount of medications and can bring you some stabilization, then these low and difficult days you still face will be a thing of the past!!!  You will look back and say, Yes, they were 100% RIGHT!  Appropriate Medication IS THE KEY!

Hugs and I hope things get better today!!   Sounds like you need MORE ALLEGRA!    Smiley

Lisa
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Re: this condition overwhelms me
Reply #4 - 06/16/11 at 06:30:40
 
Just to piggyback on what Lisa said...

When I start getting teary or irritable, the FIRST thing I ask myself is... am I really upset for a good reason, or do I just need to take some extra medication?  Liquid Benadryl has become a good friend of mine.  My moods are a lot more stable now that I'm properly medicated and take more at the first sign of symptoms.

Here's a question to ask yourself about the perfumes: am I really having a reaction? (in which case, it's perfectly OK to leave or ask someone else to leave!) or... am I just stressing out because I think this chemical is going to cause a reaction?  Give it a try Cool  Once you learn how your body is reacting and how to treat it, you won't be so afraid of the "Here we go again."

Heather
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Joan
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Re: this condition overwhelms me
Reply #5 - 06/16/11 at 07:14:32
 
Hi Jared,

  Working with your doctor to feel better is a conversation that must continue between visits, until your symptoms are under control.  If he has prescribed some medicine, but it's not enough to improve your symptoms, then the next step is to call his office or email him (asap) and talk with him or his nurse.  You need to let him know that you're not better enough yet and that you want a prescription for stronger meds. You also need to know what is the maximum dosage you can use when you're having a bad day.  

  If your meds are over-the-counter, you can simply ask him what the maximum dosages are and increase them yourself.  Antihistamines are much more benign than your symptoms are, and the newer, non-sedating ones (Zyrtec, Allegra, Xyzal) don't have a lot of side effects.  Another possibility, since you have so much stress, is to ask about doxepin.  It does triple duty as an H1 and H2 histamine blocker, as well as has a calming effect.  It can make you sleepy, however, so you have to be careful until you know how it affects you.

  One of the differences among doctors is that the specialists know what a therapeutic dose is for many patients, and they start patients out at that level.  The results are often a dramatic improvement in symptoms.  

  Starting at too low a dose is frustrating for the patient.  We worry that the medicine isn't going to work, when we're really just not at a high enough dose to help.  With proper medication, you will find it much easier to sort out which problem is causing which symptoms.

  When you are a full and active participant in managing your health problems, you will feel even better.  

 Good luck!  
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« Last Edit: 06/16/11 at 20:00:40 by Joan »  


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Re: this condition overwhelms me
Reply #6 - 06/16/11 at 07:21:21
 
I have to agree with my friends here and point out to you Jared--that not long ago, you werent having any good days. Now you have good days but it upsets you when a bad day slips in.. see what I mean?? Take their advice, increase something and think positive.. Those bad days will get fewer soon. We all have so much to be thankful for!
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Ramona
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Re: this condition overwhelms me
Reply #7 - 06/21/11 at 07:47:17
 
I appreciate you all so much responding and trying to encourage me.  At the moment I was typing this I was crying, nauseaus, and in so much pain from starting my period.  Mercy!  I have moved to a new house and left everything behind that I had at the moldy house.  That has provided me a lot of relief.  I started zantac yesterday and that, I think, is helping me too.  I can tell my body is trying to fight against it.  The tingling, itchiness, all that stuff.  But Dr. Afrin told me new meds will stir up your mast cells and to give it time.  

I definitely don't long or really fret over the fact I can't run and that I need a wheelchair in public.  My issue and one that has bothered me about this from the beginning is that I can't believe how suddenly this condition became manageable to unmanageable and completely debilitating all in a matter of a day.  I haven't met anyone else except people with POTS that this has happened to.  It's just very strange to me.  But this condition is very strange.  Sometimes I have some truly awful days that come out of nowhere.  And the same for the good days.  I'm still learning this condition and how it all works.  One thing I am so thankful for is that after the bad days or bad weeks, good times usually follow.  I fall down but I eventually get back up again.  Thanks be to God for that!
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Re: this condition overwhelms me
Reply #8 - 06/21/11 at 09:49:00
 
Hi Jared,

So glad you've moved out of the moldy place!  That's wonderful, and it sounds like you're doing better.  If you trigger from mold, do you want a list of foods containing hidden mold that you should avoid?  I'd be happy to write you one.

Getting better and stable is a one-step-at-time journey, and you're doing that!  Don't count out that you'll be strong enough to walk on your own all the time someday again.  You may always have bad days, but as you get more stable, they'll be fewer and farther between.  If you expect bad days every so often, it won't be as hard.  Simply cancel your plans and do all the self-care and meds that will help.
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Re: this condition overwhelms me
Reply #9 - 07/25/11 at 09:23:23
 
Hi Jared,

I just wanted to let you know you are not alone with the moldy house issue.  My illness was also abruptly onset one day while living in a moldy house.  Looking back there were a few warning signs prior to that day, but it was a drastic change the day after my husband pulled up a moldy floor.

I have POTs as well.

We also moved out and sold all of our belongings.  I am still searching for answers, too.  

Hang in there!  I feel for you!

Kate
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