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Tawanda70

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

28 posts in this topic

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...

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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!


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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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

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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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!


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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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

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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

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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...

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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:

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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

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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.

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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

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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

International Scleroderma Network (ISN)

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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!

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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


ISN Artist

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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

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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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 :)

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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

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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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

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Happy New Year to all!

 

My fundoplication has been rescheduled for February 23, and this time I will not cancel (hubby would choke me if I did :lol: ).

 

I am in the process of scheduling an appointment with a rheumatologist who was referred by a wonderful lady who works in the lab at my general practitioner's office. She has Scleroderma too... what a small world. When I was in there for a routine check of my thyroid levels, I told her my diagnosis, as she had asked what brought me in that day. She looked at me with such surprise and said she had it too. We got all teary eyed and we hugged like we were sisters. In a weird way, it is such a comfort to actually MEET someone who has this disease and KNOWS what it is like. She is about 11 years older than I and more advanced in her symptoms. I shared what is going on with me and she was very forthcoming about how I seem like she was 10 years ago. We joked about GERD and white hands and feet, how winter time is our worst, and sore joints.

 

Surely, someone had a hand in this and also had a hand in me getting back on board here. I am out of my pity party and feel such love from you all. Since the closest thing to a support group for me is 3 hours away, this forum is the best I could hope for!

 

Many thanks to all my 'family' here!

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I forgot... one more question. Prednisone... how has steroid treatment worked for any of you? The Omeprezole I take (at highest dosage and been on for quite a while) 'melts bones' over time and I know steroids do the same. My grandfather-in-law had Lupus and took steroids and was fine on them, other than some swelling.

 

I am concerned about osteoporosis later in life as well as bloating up and being crazy from side effects from steroid treatment, not to mention the bone loss. Any insight would be greatly appreciated :)

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Hi Tawanda

 

I'm so pleased to hear that you're feeling happier and more positive now. That's very good news about having the date fixed for your fundoplication; from what you've said I'm sure you won't dare to cancel this time! ;) What an amazing coincidence it was to have met someone else with this unusual disease in those circumstances.......and what a comfort, too. :emoticons-yes:

 

I have been taking Prednisolone since July 2009 and to start with I was very impressed with it's anti-inflammatory properties. My lung function improved, my swollen, painful joints and fingers were 100% better and I felt on top of the world. But having been on this medication for the last 18 months I'm not quite so enthusiastic about it as I was! Unfortunately I have definately put on weight (particularly on my stomach) and I notice a few spots and hairs which I didn't have before on my face. :( I don't do mood swings but I found in the beginning that I was bouncing off the walls on the steroids (I've seen it described as "inappropriate happiness" :wacko: :lol: ) I tend to have a rather extrovert in-your-face personality anyway, so under the influence of steroids I realise that I was probably becoming rather wearing to my nearest and dearest!! :rolleyes: Thankfully for my long suffering husband the effect of the steroids have worn off a little over time!

 

Like most medication there are worrying side effects; I tend to think that with Prednisolone the benefits do out weigh the problems. However, it is very important to have your medication monitored on a regular basis. High doses of steroids are not recommended for Scleroderma as it can precipitate a renal crisis so it's as well to be aware of that.

 

Regarding the osteoporosis, I take Alendronic acid and a calcium and vitamin D supplement as I have osteopenia in my hips. Certainly steroids do leech calcium and potassium from the body; my consultants took this into account when prescribing my medication.

 

In spite of the drawbacks, I do hope that the steroids will improve your quality of life as undoubtedly they have mine. :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Tawanda,

 

I'm glad your husband will make sure you follow through on your surgery!

 

How great that you met someone with Scleroderma. I had known someone since I was 15, but didn't find out until WAAAY after I had found out I had it. So great to have someone (on a personal basis to relate with). I would imagine I would do the same...HUGS galore!

 

Yes, Prednisone can be so helpful, but it's very good for it to be monitored, for the very reasons named. My hubby also uses Prednisone, but only at intervals (to help with lung infections). He also noticed how wonderful it was (during each use), how much it helped him with HIS bursitis/arthritis, also.

 

Once you have this surgery, you'll no doubt ask yourself, why you cancelled the FIRST time ^_^ !

 

Thank you for posting your update with us and enjoy your weekend!


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Tawanda,

 

Congrats on rescheduling and resolving to keep the appointment for your Nissen surgery. My husband (who does not have scleroderma) had a Nissen in order to help him qualify for a lung transplant (which he had a year ago today). He hasn't had a whit of heartburn since his Nissen (nor a whit of oxygen since his lung transplant).

 

Regarding prednisone, although many people have been on it, and certainly the majority of them would have felt better for a spell, it is strongly recommended to avoid prednisone in people with systemic scleroderma, because it can hasten death, cause sudden kidney failure, etc. so we have a section that is a Warning for Prednisone and Scleroderma.

 

Prednisone certainly has side effects in everyone, but for some reason prednisone exacerbates scleroderma, in particular. It is well known for making people feel better though, although that 'feeling better' comes at a huge price. I remember decades ago my mother was put on steroids for Addison's disease (it is imperative with Addison's disease) and told that she would no longer die of Addison's, that she would die of the side effects of steroids, instead. And the doctor merrily added that she would "dance her way to the grave!" What a lovely thought, eh?

 

This is a reason why it is helpful to consult a scleroderma expert, because they (should) know the nuances in treatment regimens and not apply a one-size-fits-all approach to rheumatic/arthritis diseases.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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