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It's been a long while since I was here...


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#1 Tawanda70

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Posted 20 December 2010 - 02:39 PM

It has been quite a while since I have come to this site. I don't even remember when I signed up! Since then, I have turned 40 and over the past 3 years, my health has been going downhill. I was diagnosed with CREST when I was 17, never really had any issues other than Raynaud's and GERD. As time has gone by, my esophageal motility has decreased, my acid pH (stomach) is now 67.5 average after Bravo test (Omeprezole morning and again at night controls most of the discomfort), joint pain has increased in my hands, feet, hips, elbows, shoulders... and back pain has increased. I have hypothyroidism now (on Synthroid). Have not seen a rheumatologist in a long while, as the last one I saw told me to deal with it because there is no cure and little treatment. THAT put a bad taste in my mouth for sure. My general practitioner has been taking care of me, but I have gotten to the point that he feels another rheumatologist is the way to go. I was scheduled to have a Nisson Fundoplication next month, but cancelled the surgery due to fear, husband being out of town for work a lot of the time, and financial reasons. I am SO tired all the time. I don't feel like doing anything because of fatigue or the joint pain. Shortness of breath is also an issue. It can be quite depressing because I feel so alone. No one in my life knows how it feels to have this disease and the many quirky things that it can do. I don't want sympathy from anyone, but at the same time, are they thinking of me as "the one who is always sick"? I am really trying so hard to keep up but sometimes the daily activities are too much. Guess this is my pity party... I usually have an upbeat attitude, but as time goes on I feel worse and worse and it REALLY is getting old...

#2 janey

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Posted 20 December 2010 - 04:54 PM

Welcome Back Tawanda!
Well, you certainly have been dealing with this for quite a long time. Have you been on any medications or treatments? From your message, it doesn't sound like it. Daily fatigue is one of the hardest things to deal with and people just don't understand it. I never did until I experienced it myself. Because other things are happening, please see a rheumatologist. They are trained for such diseases and know the "special" treatments needed to help us. Sounds like your primary care physician has been great, and he is really considering you by suggesting you see a specialist. Please don't let a doctor ever tell you to "deal with it" again! If a doctor can't or won't help you, then you need to get another doctor.

Please don't be away so long next time. Let us know how you are doing and what you do to help yourself. There are treatments that can help you!
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#3 Jeannie McClelland

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Posted 20 December 2010 - 05:41 PM

Hi Tawanda,

I'm glad you are back too. What a shame to have had such a jerk for a doctor. Deal with it? Really?? What an ignoramus...

I've had many of the same issues and have had a fundoplication. I know they aren't for everyone, but mine has been a success. As for the other issues, we started tackling one symptom at a time. Each one we got under control made the others seem less severe. Just getting the fatigue reduced was a major improvement and that in turn lowered my pain levels. It honestly is a good idea to see a decent specialist and preferably a scleroderma expert. There might not be a cure (yet), but there are good treatments for most of the symptoms.

Honey, don't ever feel alone or like you need to apologize for being ill. You didn't chose it. If you get frustrated, sad, lonely, or just plain angry, come here and vent to people who know what you are going through and really do understand.

Warm wishes,
Jeannie McClelland
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#4 Joelf

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Posted 20 December 2010 - 08:19 PM

Hi Tawanda

Welcome back to the forums!

Sorry to hear that you've been feeling so poorly and that your rheumatologist was such a dead loss. As the others have said, it really is quite important to consult a Scleroderma expert as they understand the issues involved in this unusual and bizarre disease. It is a comfort that your general practitioner seems to be a bit more helpful but as he has admitted, there is only so much he can do to help you.

Meanwhile, perhaps your doctor could suggest some medication to make you feel a little better. I suffered with shortage of breath and terrible joint pains, but as soon as I started on my medication the improvement was remarkable and I felt so much better and more positive.

Do please post often especially if you are feeling down and alone. There is always a comforting ear and a broad shoulder to cry on here if you should need it.

Here's a :emoticon-hug: to be going on with!

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#5 mopsygirl

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Posted 21 December 2010 - 02:55 AM

Hi Tawanda!

Like some of the previous posters, I too have had a Nissen Fundoplication done. Mine was done 8 years ago and was a great success. I have been off all GERD meds since the surgery! On another note- I also know what it's like to deal with extreme fatigue. I am 21 years old, and a lot of the time my energy level is so low that it takes everything I have in me just to shower and get ready to leave the house. Please remember that you aren't alone in this terrible disease, and that the members of this board will always be there if you need anything... including hugs! :hugs

K

#6 scampie5

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Posted 21 December 2010 - 05:40 AM

Hi Tawanda

Sorry to hear you are feeling so low.

Have you shown your family and friends the Spoon Theory?

It may help them understand what you are going through, do give it a try.

Lynn

#7 Tawanda70

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Posted 21 December 2010 - 09:11 AM

Thank you all for your posts. "The Spoon Theory" is great! Definitely will use it as a tool for my family/friends to have a better understanding of what my days are like.

Mopsy, glad to hear your surgery was a success! I cannot imagine at age 21 dealing with all of this. I did call my surgeon to reschedule the surgery.

My husband and I had a long talk about it last night and we have a "plan" to deal with the surgery, post-op, and coming home to heal. My girls are all "promising" to be helpful during this time and at all times my days aren't as good as others. Funny how my mother (retired RN) wants me to shield them from my disease. How can I do that? She said I will make them feel insecure. Well, they live here in this house too and see it. Talk about a GUILT TRIP! I think she should read something that will really 'rock her world of reality'. She is a strong force in my life and I still at my age allow her to play the guilt game. Any suggestions for her to read? The Spoon Theory may be too "soft" for her...

#8 Lynnie

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Posted 21 December 2010 - 12:32 PM

Hi Tawanda.
I'm so sorry you've had a lonely time. It can be lonely even when in a crowd of people sometimes when you feel misunderstood and you can't really tell them how it is and feels to have scleroderma. Everyone on the forum I am sure can relate to that.

All the advice everyone has given is very good advice and I for one have gained a lot of strength and found some courage by coming here,so,come ask your questions,shout at the in justice of it all,and find support.

Glad you and your husband and family have sat and talked. Your mum maybe reacting and saying what she does because it is her who can't handle and face that her "little girl" is sick, and struggles to sit by helpless and watch you suffer as you do, and by wanting you on the guilt trip,it's as if you don't broadcast it all then she doesn't have to face it either perhaps,a form of denial. It must be hard as a parent to watch your child suffer and hurt. If it was my son suffering it would be impossible to imagine! My dad feels that ache acutely,that it was his fault that I may have had faulty genes that he's passed on,who knows! but, we went for lunch and we talked about it all and I told him he had to not upset himself but just be there for me as I would be for him and we keep each other going. Talk to mum in depth Tawanda ask her how she really feels when you're alone, and tell her kindly you must do and say what you feel is right for you and you must do it your way, and that you need her to be there for you, to love you and respect your wishes,am sure shes scared too!

I do hope you find a rheumatologist that can help and ease you along and give you some positive treatment,and get you back on track. Take good care and hope to see you back to tell us your news
hugs
Lynn x :emoticon-hug:

#9 susieq40

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Posted 21 December 2010 - 03:50 PM

Tawanda,

So sorry you've been hurting for so long with this disease. :temper-tantrum:
It's very frustrating when a doctor tells you to just deal with it. They are
not you and only you know what you are going through. It is NOT all in your head!
There is a doctor out there that can help you, just have to find the right one, sometimes
it's a search. And it can be difficult when you have limited resources. I've only
been officially diagnosed since June 09. I've suffered many years being diagnosed with
all the other diseases Sclero causes, like the Gerd, Raynauds, Inflammatory Bowel Disease,
and of course, all the joint problems and now Lung problems. But Just do your
best at finding a good RA doctor that can help with sclero. When you make the appointment
ask them if the doctor specializes in sclero. It helps. Makes them get what your going
through..Also if they see more than one sclero patient, cause then they'd know more
about all the different sides of the disease. I too have family that just can't begin to
understand all the pains and fatigue we go through. But We are here for you!! HUGS!!!
Keep us posted!! :emoticon-hug:

Susieq40

#10 enjoytheride

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Posted 21 December 2010 - 05:47 PM

You have coped with this thing for quite awhile.
Maybe your mom would go with you to a couple of family counselling sessions? Sometimes a family member will listen to a non-family member better. If not, then at least you will have a chance to say what you feel in the presence of a referee.
I wonder if she "shielded" you from stuff or she was "shielded" by her parents. She may have this idea because it was the way she was taught to deal with stuff. I know my parents were of the school of keeping things from the children- it made for a confusing life although I agree it did make it easier for me at the time.
When I first was diagnosed, I told my sister who is my only immediate family. She made it short and sweet- she simply said "I can't deal with this" and we have never talked about it since.

#11 Robyn Sims

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Posted 22 December 2010 - 12:21 AM

Hello Tawanda,

Seems that your mum needs a reality check. My daughter was diagnosed with scleroderma when she was 26 y.o. At the time she was with her long term partner living on the other side of the city from me. During the first six months of her battle with scleroderma she stayed with my sister as her partner "could not cope" with the illness. My sister was also very ill at the time and they actually nursed each other, with me popping in all the time to take care of their needs.

Since that time her condition has stabilized but she now lives with me. Her needs are really simple.

She needs space,
She needs rest,
She needs laughs,
Never sympathy.

She needs good food,
She needs me to do all the "wet" jobs,
She needs to do all the cooking herself,
Never sympathy.

She needs validation,
She deserves praise for her determination
She needs a few hugs from time to time,
And lots of quality time with family.

Protecting your children from your illness is not the way to go in my mind. I had the experience of never understanding or being told how ill my father was. When he died of emphysema I was really angry with my mum, I never had the chance to talk to dad the way I would have wanted to. Children are very tough, they bounce back and knowing is important for them.

This forum is a wonderful place for advice.

Keep up the good work, seems you are heading down the right path.

Robyn

#12 Sweet

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Posted 22 December 2010 - 04:33 AM

Hi!
I'm so glad you've decided to post again. Here, you know you are among those who truly understand. I would seriously encourage you to schedule with a new rheumatologist for treatment. There are so many treatments that could help you. Yes, there may be no "cure" at this time, but there certainly are treatments that can help you! Keep us posted kiddo. :flowers:
Warm and gentle hugs,

Pamela
ISN Support Specialist
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#13 Amanda Thorpe

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Posted 22 December 2010 - 09:43 AM

Hello Tawanda

Welcome back! You've had some great advice already, mine is to keep posting!

Take care.
Amanda Thorpe
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#14 Snowbird

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Posted 22 December 2010 - 11:38 AM

Hi

Welcome back! It sure sounds like you definitely do need a REAL rheumatologist; one that is current and knows his/her stuff, especially about scleroderma! Sometimes, unfortunately, you have to throw away a few duds...but keep searching, you will find one that is terrific in the end for you. I agree as well, there are many treatments that can help you cope better. Don't give up!
Sending good wishes your way!

#15 miocean

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Posted 22 December 2010 - 03:22 PM

Protecting your children from your illness is not the way to go in my mind. (Robyn)

I agree whole heartedly with Robyn. I was 18 years old and away at college when my father was diagnosed with lung cancer in September. My mother would tell me he was getting better so I would write my friends that and being from a small town, everyone knew he was dying and was wondering where I was coming from. My aunt (his sister) told me he had a rare bone disease that was turning all the bones in his body to jelly because she was afraid that cancer would scare me! When I got the call to fly home I made it just in time to say hello and that was it. I never had the chance to talk with him or tell him I love him. :crying: I regret that to this day and constantly tell people I love them.

When I had my scleroderma crises and my kidneys failed my sister was very vague about it with my niece because "she is so emotional." She was 19 at the time and to this day resents the fact that she wasn't told how serious everything was. I think Enjoytheride did the right thing by telling her sister. It was her sister's choice not to deal with it but at least she was given the option. My sister had a hysterectomy and a stent put in her heart and waited a long time to tell me about either of them. I had the right to know. I don't get this secrecy about illness, it's like something that has to be hidden and everyone has to pretend that everything is alright. I can see handling it delicately with young child but adults have the right to know and choose how they deal with it.

miocean
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#16 Amanda Thorpe

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Posted 23 December 2010 - 09:19 AM

I remember that when first diagnosed I was embarrassed to tell people I had scleroderma, I have no idea why. Family knew but I felt weird about telling others. Needless to say I don't care now!

I don't agree with shielding anyone from illness, no good comes of it as others have testified.

Take care.
Amanda Thorpe
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#17 Tawanda70

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Posted 24 December 2010 - 06:51 AM

You are all so wonderful for the encouragement that I really need right now. Last two days spent in bed so I could have enough spoons today. I shared "The Spoon Theory" with my family and close friends and last night, two of my friends came by with a bouquet of spoons and flowers for me that they put together with all their love. One of those friends has an 11 year old daughter who was recently diagnosed with Lupus and a very rare (no name for it) blood platelet disorder. Now she understands how to help to daughter learn how to manage her spoons! I will try to post the pic of my bouquet on here, just not sure how to do it yet.

Happy Holidays to all and I hope that WE all have scleroderma-free time :)

#18 debonair susie

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Posted 27 December 2010 - 05:56 AM

How wonderful for you that your friend(s) have such an insighfulness and thoughtfulness, Tawanda!

Obviously, you are an awesome friend to them as well....How great for ALL of you to have such a network of loving friends! (In MY humble opinion, we can never have enough of those kinds of friends)! :rolleyes:

May you have a Very Happy New Year in 2011!
Special Hugs,

Susie Kraft
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#19 barefut

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Posted 27 December 2010 - 11:40 AM

Bless your heart Tawanda. You are not alone.

#20 Shelley Ensz

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Posted 30 December 2010 - 08:25 AM

Hi Tawanda,

It's great to see you back here again. I'm glad you're getting on with your Nissen surgery and starting to explain and garner a bit of support from your family and friends. I'd just say, don't get your hopes up about everyone being understanding; all you need is one or two friends or relatives who 'get it' (if that!) plus support from others here. But many people can understand some basics, if it is explained to them clearly.
Warm Hugs,

Shelley Ensz
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