I have Scleroderma and am just so scared all the time

[PetRescue]

I am going mad! I don't want to make this into a pity party for me, but I am having such a hard time dealing with this disease. I know we all want to be normal and don't want any disease, but I'd just like to deal with one thing at a time. I am also dealing with recurrent miscarriage and a job loss. I can't do it-it's too much!
I can't stop thinking about sclero all the time-when I get up, when I'm spending time with my family, especially when I try to go to sleep at night.

I'm scared I have “bad” doctors who won't help me. My Rheumy is the only one in my insurance plan so I can't switch and she won't help me.

I'm scared I won't be able to afford AP treatment and none of the doctors I've contacted have gotten back to me.

I'm scared I won't be able to have more children and this disease will have stolen my dreams.

I'm most scared I'm going to waste my life worrying about this awful disease and I won't be able to enjoy the life I have.

I'm just plain scared all the time-I spend most of my day worried to death and the rest of it crying.

I'm sorry everyone for complaining-I know some of you are struggling more than me, I just need some help!

~jen

[Mumof3]

Hi Jen,

I am really sorry to hear that you are having a tough time right now. It is very difficult in the beginning and I really feel for you. Believe me. You should see some of my first posts. I have been there and it was a very difficult time for me. I was consumed by it. I thought about it all of the time (day and night) and cried all of the time. I had a 10 month old and two other little ones to take care of (as well as a very sick mother) and I honestly believed that I wouldn't be around to see my kids grow up. At the time, I couldn't find an AP doctor (it's very hard in Canada) so I really couldn't see the light at the end of the tunnel. I also had a rheumatologist that I didn't trust.

Fast forward a year and a half later and I am doing much better. Physically I am doing relatively well with AP. I am able to look after the kids and live a full life. Getting a doctor wasn't easy. I spent weeks on the phone calling every doctor in Canada and the most reputable ones in the States. I finally found one that was okay before I got in to see the wonderful doctor I now see. Depending on where you live, you may have to travel to see a good doctor.

Getting to a better place mentally also took a while. I started seeing a therapist to work through what I was dealing with (I also had other major life stresses too that I was dealing with). I also took antidepressants for a year which helped too. And I even needed medication to help me sleep in the first few weeks because I was a wreck. Night time was the worst when I was alone with my thoughts. I'm not an advocate of medication or suggesting that you take medication but this is just what helped me. I'm at a point now where I don't take anything and I am in a much better place mentally.

Jen, it is completely normal to feel scared and be sad. You have a lot to deal with right now. But believe me there is hope. AP works and there are a lot of people who were really sick with SD that are now better. You may have to be persistent and make a lot of phone calls in the beginning to find a good doctor. You may also have to travel like many of us do to find a good doctor but you will find one and it will be worth it. And you are not alone. There are many wonderful people on this Board that will help you and support you. Please reach out at any time. The people on this Board are the ones that got me through the really dark days.

[Cheryl F]

Jen,

Please don't think twice about posting your feelings here.  This is the place to come for support and many “virtual” shoulders to lean on.

While I was not the person with scleroderma, when my daughter was first ill and then diagnosed, I experienced the fear you are describing.  It was incapasitating in itself.  There where days that I could not spell my own name from the stress and the fear!  Really, I am not exagerating, my brain was frozen!

When I found and read the book, Scleroderma, The Proven Therapy, I cried though the entire reading.  That there may be hope that my daughter would live was the only thing that could help me shake the extreme stress and fear. Truthfully, I had given up on the hope that she would be able to return to her “normal” life, go off to college, have a family, etc.  I just wanted her to live! 

This will not always be an easy path, and with your financial and insurance limitations you may have to be creative in accessing treatment, but it can be done.

A few things I encourage you to look into.

First, Lyme and Scleroderma:  There is a significant connection here and the more you can be aware of this, the better you will be able to navigate this road.

Second, Celiac/Gluten Sensitivity and Scleroderma and Increased Incidence of Miscarriage:  Again, there is a significant link between gluten sensitivity and both scleroderma and high rates of miscarriage.  I am currently reading a book called, Dangerous Grains, that speaks of the significant link between gluten intollerance and miscarriage.  Again, just something to check out!

Good Luck, we are glad you are here.

Cheryl F

[Trudi]

Jen–

Mumof3 and Cheryl have answered you well.  Just want to chime in to encourage you–take a deep breath–take it one day at a time–try not to look too much into the future it will only increase your stress–something better to reduce.

I will keep you in my prayers–

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Kim]

Trust me, Jen, it was agonizing for every one of us with Scleroderma to read your post because it wasn't long ago that we were in your shoes.  SD does NOT have to be a death sentence. 

Every time I questioned my choice of treatment all I had to do was read other SD boards and compare the treatments people were using and if it was working.  It was a slam dunk, those on abx were getting better and the others were not.  Seriously, it was just that black and white and helped me stay the course on days I felt like crap. 

You have a very progressive disease so you are smart to feel the urgency.  I live in Indiana and there are no good AP docs or Lyme docs in my state.  After my rheumy refused to give me Minocin I asked my PCP and he was fine with it.  That bought me time until I could get to one of our best AP docs.  I printed off material from the Home section of this site and once he saw the benign drugs I was asking for he had absolutely no problem helping me out even though he didn't then and still doesn't believe in the infectious theory for rheumatic disease. :headbang:  If your PCP won't get on board, maybe a dermatologist will, just try them all.

Vent when you need to, but in order for this to work you'll need to pull it together and insist on the treatment that feels right to you.  You'll have to educate yourself enough to be your own health advocate, which is what we all should have been doing anyway. :doh:  You'll have to be prepared to say “no” to procedures that could make your SD worse, and “no” to endless testing that add more trauma and possibly scarring to your body.  Most doctors are clueless about SD so you have to do your homework to protect yourself.

Hang in there, Jen, you CAN do this.

Take care…..kim

[Rosey UK]

Hi Jen,

I too am thinking of you. The others have said it all theres nothing to add. But please keep posting and never thing you're complaining. You should have heard me, and everyone was here to help me every step, and they will be for you too.
 You will soon find a doctor and all will be well. so hang in there.

For the time being as awful and frightening as this is right now. If you possibly can, put the worrying on hold for a few weeks until you get the AP treatment started. You don't have anything to loose, and you just see,  how everything will change with the treatment and you will recover.

love Rosemary

God Bless!

[marg]

OH, Jen! One thing at a time if you can. When my adult daughter was first diagnosed with scleroderma, the doctor told her he was sorry that there was no treatment and nothing he could do. When I researched the disease, which I had never heard of, I was horrified.

I was frantic and I know what you mean about fear just taking over your life. I couldn't sleep or go about my daily routine…but I was unwilling to accept what the Dr. told her and that was how I found the Road Back. As it turned out her scleroderma really didn't progress and she did not seek treatment. But here's the interesting thing: 7 years later she was diagnosed with sudden severe RA and was fortunate enough to get the Minocin she asked for. It helped her RA amazingly well and she is now in remission. We were really not looking at her scleroderma – fairly large lesions on her stomach and upper arm- but realized after a year that these had much reduced!! Just very encouraging.

You will get Minocin and there is every chance it will help you. It is not as expensive as the usually prescribed drugs. TRY HARD to focus on what you're going to do about the scleroderma. Other parts of your life will follow once you are getting this disease under control.

I think there is a place for counselling and also sleep aids for a time while you process all this. I will be praying for you that you find peace and strength. Stay in touch with the group here…they are terrific!

 

[Rosemary Perth Aust.]

[user=2168]PetRescue[/user] wrote:

I am going mad! I don't want to make this into a pity party for me, but I am having such a hard time dealing with this disease. I know we all want to be normal and don't want any disease, but I'd just like to deal with one thing at a time. I am also dealing with recurrent miscarriage and a job loss. I can't do it-it's too much!
I can't stop thinking about sclero all the time-when I get up, when I'm spending time with my family, especially when I try to go to sleep at night.

I'm scared I have “bad” doctors who won't help me. My Rheumy is the only one in my insurance plan so I can't switch and she won't help me.

I'm scared I won't be able to afford AP treatment and none of the doctors I've contacted have gotten back to me.

I'm scared I won't be able to have more children and this disease will have stolen my dreams.

I'm most scared I'm going to waste my life worrying about this awful disease and I won't be able to enjoy the life I have.

I'm just plain scared all the time-I spend most of my day worried to death and the rest of it crying.

I'm sorry everyone for complaining-I know some of you are struggling more than me, I just need some help!

~jen

Jen I do not understand how a Dr. will not prescribe a treatment that works

If I were you I would take along a good friend who is strong, and the Scleroderma book with you and just demand the treatment.  This treatment will save your life so you are there for your family. No one has the right to deny you a life free from suffering when it is available to you. If this is the only Dr. you can go to you need support in the surgury when you go. I have done this myself.  My girlfriend would not let me go alone again after a Dr. intimidated me and it was the best thing I ever did. This was way back when I could not even get a diagnosis.

I have a friend who has been on the treatment for Scleroderma daily for 8 years and is so grateful for hearing about it, so put your foot down.  Darling get some support also from some group or tv station or someone to help fund the treatment. Not sure how you go about that where you are but you know what I mean There has to be some organization or someone who will help finance this in cases like yours. Hope I am not asking too much of you but help from others will take the pressure off you, and treatment will help you enormously. Hope this helps

It is just a matter of finding out who.   

[maz.aust]

Just thought I would give a hand as well as everyone else ..

In the beginning we all thought our disease was a life sentence, in fact before AP most of us lived in extreme pain with what was our life as we knew it slipping away.. most of the time there wasn't even a tiny glimpse of light at the end of the tunnel .. for each of us our lives or dreams & expectations had been turned upside down .. but, in time, with the support of the great members & volunteers on this site, this wonderful group of people, who go out of their way to be helpful, they hold out their hands & are willing to take every step with you.   Yes there can be hiccups along the way, but believe me they are just little hiccups, & this is one of those hiccups you can overcome.  The strongest person is the one who can say 'I can't do this alone, I need help' .. as long as you can do that you have a strength of character that will see you through this.

There are people here who have the same disease you have, they are here to show you the way, all you have to do is what you did today & say I need help.   I just wanted you to know you are not alone!

Good luck,
Maz – Aust

 

 

 

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[rebeccaavazian]

Hi Jen….everyone has pretty much covered it and I just wanted to tell you to hang in there because things will get better on AP.   I too have SD and AP gave me my life back and I support it 100%. Dont ever feel like your complaining, we do understand and are here for each other. 

Rebecca

[PetRescue]

Thank you all for your support. It is hard to see the light at the end of the tunnel when I am being pulled in so many directions.

I am being pulled because I'm not even sure I have Scleroderma. I have the bloodwork to support it-anti-centromere antibodies and I have Raynauds, but how do I know I have it? I guess it doesn't matter because I have something with my ANA's being so high (my titer-1:1280), but what about your daughter Marg-how did they think she had sclero and then it never developed? Maybe I could go 7 years without anything developing. I know that I could also get worse waiting with treatment. I understand the urgency of treatment, really I do. Except I'm not just dealing with Sclero, I'm dealing with my life dream-more kids. I know I have one and I'm no good to anyone and certainly won't have more if I'm sick, but I just want one more soooo bad!

I know you all are probably banging your head on the wall saying “you need to do the treatment”-and I agree, HOWEVER, my life has been devastated in the last two years losing two pregnancies and it is the most important thing to me. I cannot accept the fact that I cannot have more children. I am afraid that AP therpy will prevent that dream. I am also contemplating treatment with IVIG as that is a therapy for both Scleroderma and recurrent miscarriage. Has anyone done IVIG or contemplated it?

I have been trying to get in touch with Dr. S in Iowa with no luck. I am hoping that by speaking with him, he is knowledgeable on AP treatment and pregnancy. Has anyone else had trouble in reaching him? I have emailed him and called now. Is there anyone else I can contact?

I have been gluten free since reading about that on these boards-so thank you for that advice. Who would have known-and I don't know if it's an issue for me as I haven't been tested, but I'm going to try it. And I'm going to check out that book-and order the one on AP treatment. Does anyone know if it has any information about pregnancy in it?

I am willing to try anything, call anyone, do anything to help me. I just want to know that it is possible to have a child in the future. And until I can find that out for sure, I cannot do any treatment.

Thank you all again, your support and testimonies about treatment make it so clear that AP is amazing and works. I just need to get all the pieces of the puzzle in place to make the decision of what treatment (or no treatment) is right for me. I hope you all don't think I'm crazy for questioning AP treatment-as I believe wholeheartily in its effectiveness. I just want to keep my options open and my dream available.

~jen

PS…thanks Maria for the call…it really made my day better! I hope that you get your surgery worked out!

[marg]

Jen, for a number of years my daughter had lesions developing on her arm and stomach ( but I didn't know). They became hard and whitish, kind of shiny, about 3-4 inches long. She saw about 3 dermatologists who prescribed a variety of creams etc. before one dermatologist told her it was scleroderma and said there was no help.

At that point we found a scleroderma clinic in Toronto where she was tested and the diagnosis confirmed. She had morphea, not systemic scleroderma. At the clinic they said they would track it, started by measuring it , but offered no treatment. It was scary to see the advanced patients in that office- they sure didn't look like anything was helping them.

I thought at that point that she should try to find an AP doctor, but my daughter wanted to wait. This was in 1999. She was married in 2000 and had a child in 2001. The lesions seemed to have halted, did not improve but did not get worse. I have no idea why this happened, nor could I guess whether she would still have developed RA if she had been on AP for the scleroderma. About the only symptom she has had for a long time is fatigue, not debilitating, but hard to keep up with her older sisters! There could be other reasons for this too as she has had ongoing difficulties in her personal life.

 These illnesses seem to be individual, stress certainly may play a part. Based on our experience with AP, I wish you all the best.

 

 

[judy cash]

Jen,

I'm so so sorry for what you are going through right now.It is so scary, to be sick and to think these illnesses could rob us of our dreams. Try to get well first ….If you don't get your body well then it may make having another baby evev more difficult.

 I don't know how old you are, but If you are still young enough, you still have time to get well, and then have another baby later.  I had my first baby at 39 and my second at 41…….See its not impossible. SO WHAT, IF EVERYONE ASK ME AND MY HUSBAND “HOW OLD ARE THE GRANDKIDS”? We just giggle to ourselves and say ,”we are the parents”. 

I know this is very serious to you and I do understand, I just believe that getting well first , might help with the other DREAM of yours. I will keep you in my prayers.Best of luck to you.

Judy

[PetRescue]

Thank you marg-for the clarification. It is good/bad to know that it was a different type of sclero. I am glad your daughter is doing well now.

I know I have time Judy-thanks for bringing me back to reality! I have just been trying for another for 2 years now and it is heart-breaking to have to put it on hold for even longer. But I have to get my health better first and maybe once I do that, I will finally be successful in my quest for another child (or even a couple)!

Thank you all for the support! You are the best and I am going to see Dr.S in April!!!

~jen

[saralester]

hello! gosh i totally know how you feel!
i have diffuse/systemic scleroderma and have had it for about a year before i started ap

im 29 years old with 4 girls and a happy marriage but let me tell you how difficult it is to deal with this disease!

the pain, the contracted hands, the no flexability, the tighting of skin. i dont feel myself and theres times i rather stay in bed and let go.

scleroderma is always on my mind! no one understands! BUT i get up!!!

i try to live the most normal life and to see how God uses me thru this!

I have no insurance either and for some reason my needs are met for every medication and dr appt! just take one day at a time but you need to see a AP dr…

you will be fine but GET ON AP ASAP! thats the only thing thats going to help you! i fly to cali to see my dr every 3 months and i go for my secomd visit in april. ive been on AP since january. its so comforting to have a DR that understands this disease and has tons of success stories on his patients! he is my hope. i didnt have that until i saw him! its a comforting feeling knowing your on the right path…

i ask the question why me alot and have my meltdown days! i use to be very active with my horses, riding quads etc and now i feel confined in my own body but there is a light at the end of the tunnel!

all i can tell you is get to a ap dr! dont let it get out of hand like i did! i wish i would of saw my dr a year ago when it first started, now that its so outta hand its going to take awhile to get back!

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