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having trouble being a good mom/wife while dealing with my illness (Read 5375 times)
kristi
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having trouble being a good mom/wife while dealing with my illness
09/10/11 at 16:52:07
 
Do any of you find it really hard to be a mother/wife/daughter/sister/friend in the midst of this illness? I feel like every day is such a struggle. I wake up every morning feeling awful and unrefreshed and look at each day as another obstacle to get through. I feel completely overwhelmed by my illness and all of the unknowns. I fear leaving the safety of my house. I hate when my husband has to travel for work which is all the time. Some of my biggest reactions that sent me to ER in an ambulance have happened when he's out of the country or away for another reason. I'm scared to drive my kids alone. I seem to have a lot of reactions in the car. Once I had to pull over with two of my kids and my son had to call 911 and they had to ride in the ambulance with me. Of course, my husband was out of town. As if all of that weren't enough, I just feel so emotionally dead and struggle to even find joy in and with my family. This kills me and I know they are really having a hard time with it too. We aren't able to do the things we once did to have fun as a family. I'm having such a hard time finding hope that things will ever be better. Please tell me this is normal. Please tell me things will get better. Please tell me how to help my family find joy again.

Thank you for listening. I don't know what I'd do without this forum.

Kristi
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MastoGem
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Re: having trouble being a good mom/wife while dealing with my illness
Reply #1 - 09/12/11 at 04:55:39
 
Hi Kristi!

I can completely relate to what you are saying.  I have definitely felt that way.  I'm new to this whole thing, but I wanted to tell you that the treatment protocol for MCAD seems to really be helping with the feelings you described and allowing me to do more.  I know it's really hard when you don't feel well.  I've often felt overwhelmed with my sadness, anxiety and all the things I felt I couldn't do because of this.  But hang in there - because it does get MUCH better!  It sounds like you are under medicated.  I found I needed a LOT more meds than my doc prescribed.

This is what I'm on now - JUST TO GIVE YOU AN IDEA- I really am not recommending anything because I'm new here; everyone is different; I'm still tweaking my meds; and I'm not a doctor.  But I'm posting it here because I want to give you an idea of how much different what you are taking than me and thus how much room for improvement in your symptoms there is. Plus the right diet will make a BIG difference too.

10 mg of Singulair twice a day
300 mg of Zantac twice a day
100 mg of Gastrocrom four times a day
10 mg Zertec every 6 hours
25 mg Hydroxyzine 4 times a day (more than is 'normally' used)
liquid benadryl (when I have problems)

Good luck.  
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« Last Edit: 09/13/11 at 04:43:24 by MastoGem »  

"People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within." — EKR
 
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Lisa
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Re: having trouble being a good mom/wife while dealing with my illness
Reply #2 - 09/12/11 at 05:44:09
 
Kristi,  believe it or not, YOU ARE UNDERMEDICATED!!!   This is why you feel so very rotten!!  I used to feel like this ALL THE TIME but once Dr. Castells changed my meds a bit, I began to feel like a new person!!   Singulair has made an incredible difference and without it, I go into anaphylaxis, so I´ve had a chance to see how good I can feel and how bad it can get again when I´m not properly medicated!!   And once you get properly medicated, then you regain a stability and things get calm and stay calm!!   I´ve been surprised to see how much my reacting will feed itself and when I can get things to settle down, then I find that I will go weeks without any major issues and it´s amazing to feel NORMAL again!!!

So this is why I´m certain that you just are not properly medicated!   Talk with your doctors about this or try doubling your meds yourself and see if this improves and then tell your doctors for they may not really know how to proprly medicate you.   My doctor didn´t and it was only after Dr. Castells stepped in that my doctor saw that there was more she could have done, but that she, herself didn´t know about.  My doctor is a masto specialist, but often these lesser doctors don´t have access to the newer treatments and so my doctor, not having a case like mine before, wasn´t sure what to do for me.  Since then, she´s much more free with our experiementing with my meds cause she´s learned that for patients who are harding to deal with, that this is the way to go.  

Once you get the right combo, Kristi, you will see that you will feel much like you used to!  Life will return and you´ll not regret every waking day!!

If you need help adjusting, let us know and we can see if we can help you!

Hugs!

Lisa
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Don´t forget, there is so much more to life than being sick!
 
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kristi
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Re: having trouble being a good mom/wife while dealing with my illness
Reply #3 - 09/13/11 at 06:07:25
 
Thanks Ladies! I know you are right about being undermedicated. Besides the prednisone, I'm really only taking two zyrtec and two max strength pepcid a day. Oh, and a small dose of synthroid along with 4 sprays of Veramyst for all of these sinus issues. I tried zantac and it gave me bad stomach pain. I tried singulair, bad headaches. Allegra 180 also gave me yucky side effects. I want so badly to use more and different meds so I can reach a stable and calm existence. Did you have trouble starting different meds? Do I just need to cut everything and build up slowly? Obviously something is not working.

I had a phone consult with Dr. Castells. She wants me on gastrocrom 100 x 4 a day. I'm in the process of getting the prescription from my local allergist. She says that will really help. I just fear another med I won't tolerate.

I want to feel better and I hope I can't find the right mix of meds to do so. Any suggestions are greatly appreciated!!

Kristi
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Re: having trouble being a good mom/wife while dealing with my illness
Reply #4 - 09/13/11 at 06:43:11
 
Yes, I was barely able to tolerate most of the meds I'm on now when I started them.  For example, I had to start by taking 1/4 of a dose of Zrytec and a half a dose of Singulair.  And I didn't think I'd be able to tolerate the Gastrocrom because it gave me 'stomach problems' and insomnia at first.  However, I'm able to take those without any problem now.

What do you mean, "cut everything and build up slowly"?
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Sandi
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Re: having trouble being a good mom/wife while dealing with my illness
Reply #5 - 09/24/11 at 17:31:50
 
Kristi, you are so perfectly normal having these worries, feelings. You will get more control of this disease, yes it is restricting, but you will learn how to live with what you have. Take advantage of the good days, recognize the bad and make the best. I remember watching this show where a woman had something wrong in her brain and it couldn't be operated on, she lived in a town at such and such feet above sea level and she literally cannot leave her town ever.  She had the most fantastic outlook on life, she was alive just couldn't ever leave town, so they plan vacations in town. You will become much more aware of your body, symptoms and triggers and your reactions will not get to such an extreme point, you will be able to feel it coming on and do what is necessary to stop a mass degranulation. Try to focus on what you can do, what you can eat, not cannot, what you are thankful for. You will come up with new things to do as a family that you can do. Movie nights at home, game nights, I hope your family is supportive? That's the hard part when family doesn't "believe" and wears the perfume over, it feels like such a betrayal. A lot of what is freaking you out will become "normal" soon and won't seem so scary ( not counting the ER and ambulance trips, those will always be frightening!) So arm yourself with your protocol tucked into your purse in an easy to reach spot, local ER's with your information, emergency contact for the children if your husband is out of town to ease your anxieties. Try to remember many of us if not all have had horribly severe attacks of anaphalaxis  and have lived to tell the story! Doesn't mean that when it was happening we didn't think Ok, this is it, at the time. It is scary, mostly because of the absolute mis education in the ER so our stress when before people who have our lives in their hands is much different than the average joe that has full confidence in their rescue crew. But we made it through !
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Sandi
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Re: having trouble being a good mom/wife while dealing with my illness
Reply #6 - 09/24/11 at 17:40:40
 
I had years and years of massive sinus infections, nose allergies etc. I have to say although my food allergy list is huge, by eliminating a lot of foods that bothered me, I totally turned around with my nasal symptoms, I rarely get sinus infections now, very rarely, my nose allergies are very managable and nothing compared to how I was. Also i'd like to recommend a nose spray by a company called Heel, Sinusin and Luffeel are the two different sprays they work fantastic.  They are only in heatlh food stores. If you are on dairy, get off of it while you are battling sinus problems and see if it helps.
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Re: having trouble being a good mom/wife while dealing with my illness
Reply #7 - 02/22/12 at 03:12:50
 
Hi Kristi!
I have another suggestion for you Hon.. you need to be off of the prednisone.. I know how you feel--thats scary right?? Well it has side effects that arent good IF you are on it long term.. you should limit how long you take it. When I was on it (for almost a year!!) I was crying so easily, paranoid, scared all the time... its the prednisone that makes you feel that way.
I DO understand that it saves your life--I dont go anywhere without it (just like my epi pen) BUT I dont take it unless I am starting to go into shock or degranulate. When I take it, I take enough to stop the shock--that amount is about 80 mg for me--it is different for different people. You need to talk to your DR about this. I only take one dose and it stops my going into shock and I dont get the bad side effects.

Also IF you have been on Prednisone longer than 5 days, you must come off of it slowly or it can cause other problems.  The usual way to come off of it is lowering it 5 mg every 3 days--but again, PLEASE talk to your DR about this. And remember, this isnt you, its a medication side effect that WILL get better Smiley

I hope you are feeling better soon. We care!!
Hugs
Ramona
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Re: having trouble being a good mom/wife while dealing with my illness
Reply #8 - 02/22/12 at 08:27:18
 
Poor Kristi! Yes this is SO hard and I also hate being alone. We are here for you,

I sooo agree with Ramona and am in that exact situation

Have been on steroids for 9 months since anaphylaxis and tapering off slowly as I ran into adrenal insufficiency and near adrenal crisis the first time I tried to taper. The steroids make me even more of a nutcase than I was before. I've always been emotional but HOLY DOODLE am I easily set off and randomly swinging all over the place.

With the help of the mast cell docs I'm figuring out my other meds and getting me off steroids as they do not like people on them long term for all of their horrendous side effects which I'm living

I'm down to 10 mg of hydrocortisone which is similar to 2.5 mg of prednisone daily. More about it on my blog
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Re: having trouble being a good mom/wife while dealing with my illness
Reply #9 - 03/25/12 at 20:24:59
 
Hi Kristi!  I have no medical advice to offer since I'm in the midst of tracking down a diagnosis, but I definitely understand your feelings of frustration when it comes to your family and friends.  I have three kids (5, 3.5 and 1.5), and have been extremely for almost four years.  It's really, really hard.  But I try to focus on the fact that my kids are extremely well-loved and cared for, and my husband and I find ways to connect that don't involve travelling or lots of dinners out Smiley. Is there some way that you could drive with your kids less?  Maybe find them rides, or take the bus to school, etc.?  It is one of my big issues as well, because I can start off feeling not to bad, and within less than a minute not be able to drive.  I've never taken either of my two younger children out without another adult. It's actually a little funny because they don't really think I can drive since they never see me do it Smiley

My mother has had major health problems for as long as I can remember (she has fibro and I'm pretty sure she has MCAS), and so I have a pretty good idea what it's like to have chronic illness in the family growing up (without, of course, the scary anaphylaxis element).  My mom adored us, and gave as much of herself as she could.  When we were younger it was sometimes difficult to understand why our lives looked so different from other people we knew, but we ALWAYS knew that we were loved beyond belief.  And I think both my sister and I became very compassionate towards others because we realized from early on that things aren't always what they seem like on the surface.  Your kids really will be okay, and they are going to have amazing perspective as young adults and beyond.  True, your family may be limited in activites and travel and such, but that really isn't what makes for a happy child. Try to focus on the things you can do, and don't be afraid to ask for help.  We have full-time help while my husband is at work, and it has been the greatest blessing!  I can play with my kids and snuggle them, and still have the security of knowing that if I conk out on the couch, they're safe. From your concern for your kids I can tell you're a great mom, and they are very blessed to have you!!

I wish you the best as you sort out your med situation!

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