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The change in our lives with a mast cell disease (Read 8747 times)

Josie

Ex Member

The change in our lives with a mast cell disease
02/27/11 at 03:23:59

Hi Everyone ,

I wanted to start a thread where we feel free to discuss the change in our life and how we are doing with dealing with it . This is not a pity party but a real chance to support each other through what for me was a grieving process and path to accepting our new health status .

I ahve found it hard to talk to doc's about my real changes and dealing with it because of their desire to say its all in my / our heads .

I also found talking to family bought silence or plattitudes , which made it hard to talk . I also don't want them to be upset any more by all this

This experience is not specific to masto / IA or MCAS . We have all been through so much

lets support each other in it

So me first :- I spent 6 months in happy denial , focussed on food religiously and didn't let myself feel scared . Then it hit and I spent a time in a grieving process . where I would be happy ( bargening ) but suddenly angry or overwhelmingly sad . I also holy grailed - hoping to find that one condition that I would get a cure for and be " back to normal " Then I went into its medium term , I have to accept it but only for now .

All of this on at he backdrop of 3 weekly shock and daily major symptoms .

I use the poem :- have the courage to change the things I can , serenity to change the things I can't and wisdom to know the difference .

I love music so I ahve had songs at various parts to help me

. From Bon Jovi - Saturday night .

Some day ill be saturday night ill be back on my feet , doing all right

Hay man im alive taking each day and night at a time , yeah i am down , but I know ill get by.

And when i found the right Doc's - paul mc cartney - let it be -

There will be an answer , let it be ..............................

But at times I was more Parklife :- I wake in in afternoon , except on wednesday when I am rudely awoken by the dustman "

The Biritsh garbage collectors have a huge truck and are very noisy !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

But Christmas day 09 . i decided to start a revolution form my bed . At that time it was exactly that . i was very poorly . In bed , using a commode ( bedside toilet ) . I manged to make a loaf of bread that day , by helping my partner sort ingredients for the new bread maker . I also did remote cooking of christmas dinner with timing directions to hubby . I manged to be wheeled to the sofa and eat my dinner

I know it sounds so sad and it is , but that was a major achievement for me that day

.

Now I have accepted I am changed , but I can live within this . Work is the thing I miss Sad

. My children have been my drive and motivation even on my worst days . That remains how things are .

Josie

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Riverwn

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Re: The change in our lives with a mast cell disease
Reply #1 - 02/27/11 at 07:32:26

Wow,Josie this topic sure resonates with me!! I always knew you were brilliant.. Its funny.. have you ever noticed how many of us were Type A personalities and how many of us are also at a higher level education and fast lifestyle?? (before masto) BM=before masto LOL.. please excuse the pun, I get my laughs where I can hehe...

OK... I think,l or I KNOW at a soul level, that you cant merely walk away from a previous life experiences without grieving.. it has to be released slowly, grieved for and let go in place of future POSITIVE plans and outlooks.

I dont think we should totally dissolve into pity for ourselves but I know you cant let go of something until you tell it goodbye. The trick is NEVER staying in that spot long... and keeping a positive outlook no matter what. In all things, there are people worse off than we are.. and our blessings are important.

I had to start by telling my career goodbye.. What a mess LOL.. I didnt realize how I felt my own self worth by being a Nurse. When I had to let it go and the idea that I wont be able to do it again, I had to ask myself WHO I am now.. and who will I be?

I had to get used to using "zippy carts" for handicapped people at the store.. and I started using a Disabled placard when parking.. but that first month using any of it would push me to tears...I dont know how many people I have told "Im used to BEING the caregiver, not needing it" as a way to rationalize that it was ok for me to be me but different.

This last week I opened a new bank account--and picked the atm card with NURSING, makes a difference pic of it.. I reclaimed it as me, no matter what.

I realized that I am forever a nurse, even if I cant work at it.. and I think this forum for making me feel that I make a difference in anyones life.. I guess thats crucial to me.. and I thank Debbie for it!!

Fellow nurse friends slipped away. They dont know how to handle something they cant treat or cure and they are afraid the situation is contagious LOL... so my support circle narrowed.

My family first went into denial and would act as if I would be fine soon... but I know now that it was their own fear and feelings of helplessness they were reacting to. I let them know which small things they can do to help me--and they dont feel so powerless.

They go through phases too. They cried in private then they got busy and asked me what food could I not have, what made me feel better or worse.. now they tell me LOL...

I ent through times when I would suddenly break into tears, like the first time I knocked over a store display with a zippy cart!!--so I took my xanax more often LOL--to learn to laugh at it all.. it helps! And I let people (strangers) help me--it is stupid for me to feel ego pride when they offer to help me reach something--and if I dont, how do they know to help the next person???

I realize there are still things I will grieve over in the future, but I will never forget my blessings and I ill NOT get stuck in that spot of self pity.. I can make a difference.. and live happy, I just have to do my own research and plan!
Many hugs,
Ramona

~~~Count Your Blessings!~~~

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Josie

Ex Member

Re: The change in our lives with a mast cell disease
Reply #2 - 02/27/11 at 10:48:05

Hi Ramona ,

Thank you sweetie . You sum up all my feelings about nursing

. My devistation was as you say , i am josie and i am a nurse . The first time I was described differently really upset me . I have realised now that I am still a nurse , its just my time on the front line has come to an end

I will use my knowledge in the most caring and constructive way I can .

My family to ahve gone through stages - denial , to the extent of thinking I was giving up

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! To making decisions for me . Now they see I am me , just different . Hospital staff have also gone through the same process . I watched the nurses in my ED evolve as they accepted what was happening to me .

My hard moments have been in hospital , where I am on the other side and I felt I was having my nose rubbed into it - seeing what mentally is completely possible but physically is not . I have found this easier over time . I am now attending my own hospital . This has I find brain fog horrid because it feels like it is taking my mind away .

I have used the kubler- ross model of death and dying - I know I am doing neither , but its a useful model of grieving . I has helped me understand the process in me and those around me .

It is has 5 layers , which you may experience in sequence or flit between .
Shock ( numb )
Denial
Bargening
anger
Depression & finally
Acceptance

I would find in one area I was in denial and another bargining and another depression . So this made me feel like I was on a roller coaster . feeling hopeful ( bargining ) then suddenly very sad . It is an experience of many extremes . I let my ride it and the emotions settle

Some days it all feels such a lot to deal with - me and my boyf call these little days . We just let each other be

It may be us strong personalities are most likely to push for help xxxx It could be the question for research . I hope I am able to help in any way here . I was always the small things matter nurse , seeing sometimes what is needed

Yes , I had noticed that most of us lived well BM ( like it ). I found there was no food I wish I had tried or life experiences I wish I had taken !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I feel lucky to be me , have my inteligence and outlook
I am positive as I see no point in being negative . I let my emotions ride and count my blessings everyday .

hugs sweetie xxxxxxxxxxxx
Josie

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Riverwn FORUM MODERATOR/ADVISOR Offline Posts: 993 Gainesville, Florida	Re: The change in our lives with a mast cell disease Reply #3 - 03/01/11 at 20:51:11 Dear Josie, You speak eloquently and I can assure you, you speak very much for me too.. and your support and presence here makes a huge difference in my life . Never question that!! Sister Nurse and patient... we are strong women and cant be held back !! Huge Hugs Ramona
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Josie Ex Member	Re: The change in our lives with a mast cell disease Reply #4 - 03/02/11 at 07:02:55 Thanks sweetie xxxxxxxxxxxxxxxxxx hugs Jose xxxxxxxxxxx
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MastoGem

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Re: The change in our lives with a mast cell disease
Reply #5 - 08/08/11 at 14:14:54

Thank you Josie for posting this.

I was diagnosed ten days ago and I'm definately in the depressed stage of this. Yet, I have to laugh a little because I've ALWAYS been in the depressed stage. I've always thought one day that I'd find the answer and feel better. But now I've found the answer and it would seem I'm going to feel worse and worse. WOW. I don't even know where to put that in my head! Not to be at all theatrical or dramatic, but I'm honestly not sure I can do this.

"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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texan1960

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Re: The change in our lives with a mast cell disease
Reply #6 - 08/09/11 at 02:40:52

I am sorry you are feeling so down right now...it can be a lot to take in when they give you a diagnosis. But, remember, right now you are probably at one of your worst stages. Once the new meds have time to work and you get better and are able to figure out your triggers, you will be on a better course. I remember when I first got diagnosed with IC (mast cell disease of bladder)...I thought my life was over. But the medicines and figuring out triggers helped so much. Is my life perfect? NOOO! Can I do everything I used to do? NOOO, but I am also no 25 anymore. So, I guess what I am saying there is life after diagnosis and you will figure out things that help you and don't so don't give up! Hang in there by your fingernails until things get better! PS-I was diagnosed at 40, now 51 and still rolling along...okay a little bumpy sometimes, but well worth the journey.

A joyful heart is good medicine.

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MastoGem Tutor Offline I Love YaBB 2! Posts: 62	Re: The change in our lives with a mast cell disease Reply #7 - 08/09/11 at 03:32:49 Thank you Texan!
Back to top	"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 IP Logged

Riverwn

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Re: The change in our lives with a mast cell disease
Reply #8 - 08/09/11 at 06:21:11

Gem, I like that name.. it describes you so well---a gem to us

You will get past the sense of loss and depression--and sometimes you will have days where it reappears again and its time for a day of bubble baths, chocolate, chick flicks and ice cream lol.. then we get back on the right road again!~

It does get easier over time--when your neds are well tweaked so you feel better, and when you have learned how-to grab that particular med to help knock off a symptom.. Time to put YOU in control of your own life again, and you will feel marvelous

Until then, you have us to run to, we got your back sweety!!
hugs
Ramona

~~~Count Your Blessings!~~~

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DeborahW, Founder

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Re: The change in our lives with a mast cell disease
Reply #9 - 08/09/11 at 15:47:01

Totally true, Ramona!!! I was at the bottom of the barrel when I was at my sickest (when I first got sick). Now I am the healthiest sick person around! LOL. I can do tons of stuff, eat a bunch of things, and enjoy having a pretty normal everyday life. I still have many things I must avoid, but it's not a problem in my book!

Feel well!
DeborahW, founder

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Joan

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Re: The change in our lives with a mast cell disease
Reply #10 - 08/15/11 at 19:36:35

Adjusting to the new "normal" takes some time. As you can do more and feel better, the sadness and loss will lessen. Your life isn't the same, but it's definitely not over. I finally got a diagnosis after 16 years of symptoms and also felt really let down. It seemed that what I really wanted wasn't a diagnosis, but rather for it all to just go away. Of course, it hasn't, but I can do more most days than a lot of "healthy" people can. I can make really great food to eat, find something to order in most restaurants, hike in the mountains, walk for miles, travel, etc. There are limitations, for sure, but once you're more stable, those get better, and you'll feel better about all of it, too.

All that said, there's still a grieving process to go through about the loss of your former life. Occasionally, it still bothers me that I can't walk out the door without a pound or two bag of epi and other meds. I can really crave a normal pizza with tomato sauce or shitake mushrooms, but that's not often or long.

If the depression is debilitating, you might want to consider an antidepressant or anti-anxiety medicine for a while. I know some people have said they take Buspar, but there must also be others your doctor can recommend. Sometimes the stress of depression can make your symptoms worse, and you don't want that!

Joan

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MastoGem

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Re: The change in our lives with a mast cell disease
Reply #11 - 08/16/11 at 06:30:40

I guess I should try Buspar/Wellbutrin again. It's just that it gave me insomnia when I tried it before and when I really need it is during a 'trigger'. And I just can't picture it helping against something THAT powerful.

But I'm considering it again after last night. I had been feeling much better, but I went DOWN last night in a big, ugly way. It scared me. I didn't realize I was so "unstable". I feel embarrassed.

I think it's because yesterday I worked out at lunch for 40 mins, and then after a nap, I went dancing at night for just an hour. It was too much I guess.

Seriously anyone who saw me last night would've taken me to the funny farm for sheer sadness. Do you guys know what I mean?

I'm only me so I can't say for sure - but I don't think most people without this get as intensely emotionally in pain as I do. I've always just hidden this. Once I made the mistake of keeping a therapy appointment in the middle of a trigger. I was a mess - short of hysterical with grief not 'crazy'. Ok? I knew it would pass, but my therapist didn't. She called the cops and tried to have my involuntarily admitted. Yes, I know she was just trying to help. But you can guess what I said when she asked me if I wanted to come again next week. I found out that my feelings during a trigger were not appropriate for therapy. So I left it. I had years anyway. Maybe this is TMI. I gotta change my pic to a beetle or a puppy or something now.

So anyway, I finally get to communicate about this with people who may get it. And I think maybe you guys will get why I feel like Wellbutrin didn't work before and probably won't work now during a trigger. Hopefully nobody who reads this will just think I'm negative or seeking attention. Maybe I should just shut up until I give these meds longer. It was just a really hard night and I don't know what it means - I'd like to know it this means I can't workout and dance in the same day. And I'd love to know how to not screw up a romantic relationship with this kinda bs rearing itself.

"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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DeborahW, Founder

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Re: The change in our lives with a mast cell diunexpressed
Reply #12 - 08/16/11 at 07:26:56

Hi. I wonder if you mean that you are feeling emotionally depressed or do you mean helpless to control your symptoms? How long have you had symptoms? I would say that it is very natural to feel either or both of those ways when you find your life changed by an unexpected medical condition. Is that the reason for taking the Buspar? I took that once in my early days of being sick. It didn't help me; it just made me dizzy. So I got rid of that one. I think that what helped me was gaining a sense of control over my anaphylaxis. Knowing that I had emergency meds to stop my symptoms and knowing what to avoid as triggers gave me hope and a positive sense of control.

You definitely shouldn't feel as if you are the odd one our because of your feelings. We all feel that way at times. Getting a hold of your emotions, though, is key to feeling better. Stress (positive or negative) will trigger symptoms. So the place to start is to identify situations or places in which you will feel stressed and avoid them for now. Once you feel stronger emotionally, try slowly adding them back if they re unavoidable.

Feel well!
DeborahW, founder

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MastoGem

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Re: The change in our lives with a mast cell disease
Reply #13 - 08/16/11 at 08:01:26

Thank you Deborah. I appreciate your advice. I have to say tho that there really isn't a way to 'get a hold of my emotions' during these times other than sleeping. Honestly. I do believe in an individual's ability to manage their emotions with re framing, CBT, etc. But I can't say that works for me during these times. Thank you for your comments- I do really appreciate them and all you do here.

Is there a way to delete my post? I don't even see how to modify it.

"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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