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Putting things in perspective


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#1 mando621

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Posted 21 August 2009 - 03:43 PM

Hi,

I recently saw the rheumatologist for a followup, and while there are many signs that I have something involving connective tissue, the doctor is reluctant to but a name to it. He doesn't think it is scleroderma at this time.

My blood work was all normal, PFT normal, echocardiogram normal. Skin biopsy showed slight thickening. I have abnormal capillaroscopy, joint pain and some swelling, Raynauds, sicca, fatigue, esophageal dis-motility, etc. Anyway, he prescribed plaquenil, I filled the prescription and received the generic form.

I took two doses, and I was miserable. I'm sure there must be a period of time that it takes for the body to adjust to the medication, but I can't afford to be in distress intestinally when classes are about to start! He prescribed the medication to see if it would help with fatigue I'm having. There seem to be many negatives about taking the medication, and I just don't want to bring on more problems.

I will probably have people think this is wrong, but I've decided that I've pushed this far enough for right now. I'm going to see how things go without the plaquenil. I'm going to try to get more sleep to see if that alone might help with fatigue.

In six months I have an appointment to see the rheumatologist again. I don't know if I'm going to keep the appointment. Since I don't have any internal issues, and my other problems aren't debilitating, I've decided to just keep an eye on things, and try not to obsess about my health. The rheumatologist and nurses were out of the office this week. I'm going to call and talk with the nurse about this. I'm glad that everything was checked. I feel better about just waiting to see what develops now that I know that I don't have major problems already.

I check in once in a while to read your posts, but I'm trying not to spend most of my free time on the site. I think I'm okay with not getting a definite diagnosis at this time, as long as we (the doctors and I) know that this is something to be on alert for. I plan on making an appointment with my general practitioner to go over all this with her too.

It has taken quite a while to get to this point. I've gone through many of the phases of grieving, and I've decided that I really need to get on with living fully instead of worrying constantly. I really appreciate all the support out here, and as I said, I'm not leaving permanently.

If you have feedback or suggestions please let me know, I will be checking back. I noticed that I already feel a little happier and lighter with making this decision. Now, if I could only find someone locally that I could sit down and talk to over tea. I don't know if the "other shoe" will drop and I'll have clinical diagnosable symptoms. Rather than wait in dread about this, I've decided to try to move on.

A friend just went through surgery to repair two heart valves. While the surgery was successful, it had complications. She ended up with an infection and a major stroke. Her left hemisphere of her brain has completely shut down. At this point, she is in a near vegestative state. This has occured after my decision to try not to worry so much, but it seems to tell me that it is the right thing to do right now. Until I know that I definitely have scleroderma, as someone has on their signature, scleroderma doesn't have me.

Bless all of you. Live, love, and laugh as often as possible.

Mando.

#2 debz

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Posted 22 August 2009 - 12:39 AM

Dear Mando,

I am so sorry to hear about your friend! I can so relate to how you are feeling and with all that is going on without a definite diagnosis.

I am in the same position, with just about identical symptoms! It is hard to sit back and decide whether you can be content with a 'non diagnosis'. I have been on Plaquenil 400 mg since 2002 or thereabouts and just recently was reduced to 200mgs due to pigmentation on my retina (whether or not is plaquenil related has not been determined) but my rheumatologist has decided it is better to be safe than sorry! I have found since reducing the plaquenil that all the nasty things that invaded me way back when have come back to haunt me! Namely, the fatigue, which has been unrelenting...joint/ muscle pain even skin rashes. I am seeing my rheumatologist again in September, so will be telling him everything.

This journey is a very difficult one, even harder when you don't 'really' know exactly what it is you are dealing with (mind you, we all have a fair idea!). I think the most important thing is that you are being treated for the symptoms that are troubling you. I really don't taking alot of medications, but didn't realise that reducing one (Plaquenil) could have a huge impact in such a short time.

Mando, I really wish you well. I have followed your posts and feel I can relate to alot of what you have going on. I don't post often myself, but like to join in the chat sometimes. It is comforting to be able to talk to people who are experiencing similar problems in a way. Take care

Hugs Debz

#3 Amanda Thorpe

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Posted 22 August 2009 - 10:41 AM

Hello Mando

What an incredible post, I am sorry you friend is so very ill.

Whether or not you take the plaquenil has to be based on the which is worst theory, the symptoms or the side effects and it seems you feel the side effects are worse. Do talk everything over with your doctor and seek their opinion about cancelling the appointment with the rheumatologist which is still 6 months away as you may feel differently at that time and if not you can cancel then.

Whatever you decide coming to terms with our situation, whether a diagnosis or not, is a long, hard process and it seems you have now come to terms with yours. You are absolutely right to focus on living your life and I wish you well.

Take care and pop in anytime you like.
Amanda Thorpe
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#4 Sweet

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Posted 22 August 2009 - 04:01 PM

Hey Mando!

Bless your heart *hugs*

I was put on Plaquenil 9 years ago. It was horrible at first, oh I'd say for about the first 2 months. I was sick to my stomach, dizzy, diarrhea, and a lot of hair loss. All that balanced out and the good part kicked in and it's been a life saver for me. Most people I believe only take a couple of weeks to break into it, so if you could stand that I think you'd be a happy camper!
Warm and gentle hugs,

Pamela
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#5 smac0719

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Posted 23 August 2009 - 05:56 AM

Hello Mando,

I have been taking Plaquenil for a couple of years now and did not have any side effects from it at all. I understand how you feel though as there have been times that I have decided against taking a recomended med or course of treatment as well. I understand your current feelings and would also recommend discussing them with your physician be it a primary or specialist or both. I found that when mine have understood my position with my health and how I choose to monitor it, we were able to work out the pros and cons together.

Take care of yourself, best wishes and don't be a stranger.
I may have Scleroderma, but Scleroderma doesn't have me!

#6 mando621

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Posted 26 August 2009 - 03:26 PM

Hi again,

Thank you so much for words of encouragement. Thank you for your thoughts for my friend. I found out today that she is being moved to a specialty treatment hospital, probably because she needs to be on a feeding tube. I think it is probably a fancy title for a nursing home.

I have yet to call the rheumatologist, but I will soon. I also need to make an appointment with my general practitioner too. I've been back to school for orientation week, and haven't had time during the day to make the calls yet.

Yes, I think at this time, I'm not willing to bring on new troubles by taking plaquenil. I already have ringing in my ear, my eyes are so dry and I have trouble seeing at times. I wear trifocals and go crazy figuring out which lens works in each situation.

I'll keep checking in, I like to read what is going on but I don't plan on doing so much research on things.

I didn't get to talk to my uncle, a geneticist, about this issue. I couldn't bring it up with all of my family around. I've thought about emailing him, but I don't know what he would have to say. He is working in stem cell research and cloning trying to develop deer that are resistant to chronic wasting disease.

Thanks for being here.

Mando.

#7 mando621

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Posted 31 August 2009 - 04:17 PM

Hi,
An update on my friend. She passed away today at 3pm. I've been out of sorts today thinking about her. She sure wasn't ready to go yet and other than the heart valves that were replaced she didn't seem to have any problems.

School starts on Wednesday, classes anyway. I've been planning my classes. I got so cold in my office today I could hardly type. I found a small personal heater in the garage and that is going to work tomorrow!! Is this actually August? It is predicted to be warmer as the week goes on, so I might actually use my air conditioner (more like a fan for me) some time this fall. Unfortunately, the heat doesn't usually get turned on until sometime into October.

I was suppose to hear back from the rheumatologist today, supposedly. I guess I could check the answering machine, but I doubt they called.

We moved our eldest daughter from her summer apartment back into the dorms: 3 flights of stairs, tons of boxes, bags, containers, and odds and ends, no time to take her out dinner (she had to report back to marching band), Priceless! Oh to be at that point of life again. Of course, it goes without saying that I wouldn't want all the homework, HA! It probably wouldn't be as enjoyable without the hassles of doing school work. You sure appreciate the good in things when you are able to see the hard work that goes into it.

Have a good week.

Mando.

#8 janey

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Posted 31 August 2009 - 05:24 PM

Mando,
Just wanted to send you lots of big ((((((((((((((((((((((HUGS))))))))))))))))))))))). You know you are in our thoughts.

Yes - I do remember those wonderful college days. Wonderful times but not sure if I would want to do them over again. I'd love the energy and the health, but could do without the sleepless nights, testing, studying, and all night parties. :lol:

Big Hugs to you Darlin'
Janey Willis
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#9 debonair susie

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Posted 01 September 2009 - 08:51 AM

Mando, I was so glad to read that you have re-evaluated and decided to live life fully.

It really is easy to feel as you have. Being chronically ill can take such a toll on a person, not only physically, but also mentally as well as emotionally, as you readily pointed out in your post.

I'm sure I can speak for ALL of us...that you are not alone and we are so glad that you are rallying!
Special Hugs,

Susie Kraft
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#10 Snowbird

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Posted 01 September 2009 - 02:15 PM

Mando

Glad to see that you are still going to check in on us from time to time! :) :) :)
Sending good wishes your way!

#11 Kamlesh

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Posted 05 September 2009 - 06:34 PM

Hi Mando,

Life is a journey and not a race.

I am glad to see perspective you have taken.

In this journey, you might find incredible experiences.
My last five years of the journey were lot more eventful than previous 50.

In 2005, severe onset of scleroderma, extreme fatigue, new job in California, severe depression, fever shooting up to 102-103 degrees every few weeks, it was simply unbearable situation. Life is too precious and slowly small baby steps of determination, three years on 3000 mg Cellcept, medications to help with depression and sleeping, surgery for acid reflux, I am more happy, humble, and enjoying my life.

When you think you are living on borrowed time, every moment brings so much happiness. I'm glad to see perspective you have taken.
Kind regards,

Kamlesh