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Hi everyone-I just want to take an opportunity to thank you all for helping me make the right decision to pursue AP. I was so stupid to think I could have just let SD take my life away. I know now that I must stop it in it's tracks. I would never have known so many things (lyme, celiac, vitamins, minerals,enzymes, saunas) that are so important to our lives. Even if someone didn't have a rheumatic disease, this forum is such a wealth of information thanks to all the great volunteers and members.
I still have a lot of learning to do, but I'm making progress! When I have been overwhelmed by what I have learned, I step back and take one thing at a time. It is hard to prioritize things when it comes to your health, but this didn't happen overnight and it certainly won't be fixed that quickly either.
Maz-you were the first to respond to my post and bring me back to reality. I have a disease. Yes, I will get better, but I needed the reality check. I need to get my health addressed first and then worry about a baby. And I now have no doubt that one is in my future. You are an indispensible wealth of knowledge and I don't know what we'd do without you! And I recently came across this link you posted:
http://www.drmirkin.com/joints/J159.htm
Do you think I could get Dr.S to test me for all of them? 😉Kim-you have been my inspiration. You are doing everything I hope do to in the future. You have the right attitude and I look to you to get motivated. I wish I'd have thought of “whatever it takes”-but it fits you so well.
Maria-thanks for that first phone call. You are a no-nonsense kind of gal. I can see how you're beating SD and Lyme. Thanks for all your help with bloodwork and getting me into the LLMD. That was such a weight of my shoulders. I can't wait to get the results!
Connie-I'm so glad we have found each other-us cat ladies! It's too bad SD brought us together, but I couldn't have asked for a better shoulder to lean on! You are amazing and thanks for being there for me.Mum-Thanks for all the helpful tips and letting me vent. You've been a great supporter when I've been worried about nothing.
Cheryl-You are a great mom who has an awesome daughter. Thanks for all your work with roadback and letting me bounce my concerns off you.
A Friend-I love reading all your suggestions for supplements and good health. It is things that are affordable and basic, but hidden in our over-medicated world. Thanks so much for your guidance.
JB-I read your entire post about your visit to Dr.S. It was super helpful. That's what you are-our helper. You always try to help everyone and give your take on things. Thanks for sharing what you're going thru.
Lynne-your go-get-um attitude makes me what to go get the bugs-be it SD, Lyme, etc. You're getting 'em too!
Sue-I hope with my heart that Ryan gets better soon. Just keep doing the best you can. It is all so confusing, I relate with that. And so scary for you as his mom-but you are doing a great job and let me know if you ever need anything.
Marg-thanks for your insight. It has been very comforting.
Judy-thanks for keeping me grounded and telling me about your great visit with Dr.S. I can't wait to meet him!
Michelle-great job taking care of your mom. It makes me wish I had that relationship with my mom! You're lucky to have each other 🙂
Carrie, Sara and Rebecca-seeing you all like me (young, strong women) getting better reminds me that I will get better too!
Joe-my husband reminds me about the mind/body connection all the time. It's hard to remember the power of your mind when your mind is running in all different directions. I've been reading to help center my mind.
Randy-I don't think you've ever posted to me, but I've read your story and when I was so scared of SD I kept your mantra in mind…GO AP, BEAT SD. You couldn't have said it better!
So thanks to everyone again. I'll send well-wishes to Dr.S when I see him and I hope he enjoys the Chicago deep-dish pizza I'm bringing 🙂
~jen
Jen,my little one.I had to laugh when you were saying that your mind was running in all directions.That makes me believe that you are not in such a bad shape.Most of us are in such a state of brain fog at the beginning that our minds are barely functioning. hehehe.Believe us when we tell you that you will be in just as great shape as most of us are.
I gather that Pet Rescue involves saving stray cats?You sure have company,I am the proud mother of 16 cats,a come and go goose,a muskrat that lives under our boiler for the greenhouse and begs for apples,a half dozen skunks that think they are cats and use their cat-door to come in for supper,A load of frogs that I rescue from the cats ans a few hurt birds.Needless to say ,I have a very good vacume cleaner
Lynne
[user=2168]PetRescue[/user] wrote:
Michelle-great job taking care of your mom. It makes me wish I had that relationship with my mom! You're lucky to have each other 🙂
Wow, I'm humbled and privileged to be listed among all of these amazing people! Thank you Jen! I appreciate those words more than you know! I can not wait to hear all about your trip! And all about your recovery!
And yes, I know how lucky we are to have each other, thank you for reminding me because sometimes we take people for granted!
Blessings to you Jen!
Michelle[user=31]Lynne G./SD[/user] wrote:
Jen,my little one.I had to laugh when you were saying that your mind was running in all directions.That makes me believe that you are not in such a bad shape.Most of us are in such a state of brain fog at the beginning that our minds are barely functioning. hehehe.Believe us when we tell you that you will be in just as great shape as most of us are.
I gather that Pet Rescue involves saving stray cats?You sure have company,I am the proud mother of 16 cats,a come and go goose,a muskrat that lives under our boiler for the greenhouse and begs for apples,a half dozen skunks that think they are cats and use their cat-door to come in for supper,A load of frogs that I rescue from the cats ans a few hurt birds.Needless to say ,I have a very good vacume cleaner
Lynne
Love you Lynne! :roll-laugh:
Thanks, Jen, for your kind words.
It's all about paying it forward. You'll get better than watch out, we'll make you a volunteer. :roll-laugh:
Can't wait to hear about your trip to Iowa, but bring a couple of good books because there's not much to do there. Be sure to have ice cream at the old fashioned soda fountain at the pharmacy downtown, and the food at the bowling alley is really good,…..no kidding. 😉 We had lunch there and the rental shoes and the food were served from the same counter. :shock::shock::shock: I told my husband that I was bullet-proof because I was shot full of abx, but he was on his own. I heard they remodeled after I was there so maybe the board of health has changed their system, and wouldn't that be a pity because I'm sure it will affect the taste of the food. You had to “experience” the adventure, seriously sitting in a bowling alley in the middle of Iowa with an IV line in your hand eating greasy food. 😯 Hey, no one said this was easy. 😉
Take care…..kim
Kimmie,you are just too funny.I can just about see the place in my mind.
Michelle,ma belle,je t'aime aussi. XXXXJen – My pleasure. Any time you need to vent etc., I am here for you! Thank you for your kind words. Good luck in Iowa. I hope all goes well. Please keep us posted on your progress! Take care!
Jen,
You are so sweet–thank you for your kind words. I remember the first time I spoke with Cheryl, and all the uncertainties I had about whether or not I had SD. She was brutally honest about believing I had SD, and to get treatment asap. I needed to hear that because NONE of my doctors were doing anything about the state of my deteriorating health. MANY people on this board helped me through some very, very dark times. (and continue to help me) I'm honored and humbled to be able to pay that forward. Once I got over the fear of the “label” of this disease, it was at that moment that I was determined to never let it define me. All of us are so much bigger than our diseases could ever be. Keep asking questions, finding answers, and doing what you can to advocate for your health. Never ever give up hope, and know that you can get through anything that lies ahead. We are all here for you, cheering you on, and anticipating your recovery:)
Please let us know how your appointment goes, and be sure to give Dr. S a big hug from his Road Back family.
Maria
Jen,
I put this picture link and posted on Ida Grove link.
http://picasaweb.google.com/jblmike/IdaGroveIowa?authkey=Gv1sRgCL7ns_2ik_3iTQ&feat=directlink
Not sure you saw it or not. Hopefully it will be a sunny day when you are driving there. We took I-80 all the way out there then took a turn up to north (see the picture) to Ida Grove. It takes about one hour after off I-80.
Keep us posted and give Dr. S a big hug for me!!!
JB
Lynne, thanks for the encouraging words, I need those now as I'm starting to get anxious to go. Good anxious of course, but just getting ready to go! Yep, I'm a crazy cat lady. I would love to have a goose! We have two ducks that come every morning to eat from the bird feeder-I just have to watch for them before I let my dogs out. I would love to have a farm one day ad my dream is to have goats. I don't know a thing about them, but I love them! I hope to be as good as you Lynne-you sound amazing hearted!
Michelle-I'm happy to list you as you're doing a great job trying to help other as well. I read the story of Yana and it broke my heart. So tragic. I will do whatever I can to help pay it forward-once I get started that is!
Thanks Kim for the tips! I just went to the library to get a bunch of books. It will be good down time. We'll be there all weekend and are going to stop in Des Moines and do something depending on the weather. I just watched Food, Inc, so I'm on high food alert and scared to eat anything anymore! I certainly won't be having any hamburgers! I'm afraid I won't be able to enjoy the same “experience”-but I'm sure it was interesting! I would love to volunteer and pay it forward, just let me know how when I get into remission 😉
Mum-thanks again…I'll be sure to keep everyone posted, you all have been my life-lines.
Maria-I have to admit, I felt a little overwhelmed after talking to you. I was still in the whole, do I have it or don't I stage. I too was scared to be labeled as “I have the disease Scleroderma”. Sounds so scary, even now. It's so encouraging to know that you felt that way too. I never would have guessed it…you are so strong! I've been reading some other posts and I love your attitude-I don't care what it's called, just treat me for it! That's what I want too! Thanks to you, I'm now going to demand that I get treated for my own health too!
JB-thanks for the link. We are taking I-80 too, going thru Des Moines and stopping there to spend some time at maybe the zoo or the science museum. It's good to know an hour after 80, it will be the best hour I've driven! Dr.S will get a hug from you!
Well, guys, I'm off, we're leaving in the morning and I'll be sure to send lots of hugs and hello's to Dr.S. Thank you all and I'm ready to get on the road…..and back!
~jen
[user=2168]PetRescue[/user] wrote:
Well, guys, I'm off, we're leaving in the morning and I'll be sure to send lots of hugs and hello's to Dr.S. Thank you all and I'm ready to get on the road…..and back!
Jen, I'm slow on the uptake this week, catching up on PMs and emails and just saw your message above…thank you for all your kind thoughts and just wanted to wish you well for you journey and first appt with Dr. S. I understand he's just lovely and will be just the reassurance you need. Don't worry – he will test for everything he thinks you need doing at this stage. He may not feel it necessary as you're so early on in things…I believe he tests for infections mainly to code IVs as infection for insurance, but AP works for sclero either way and you can work on Lyme testing after your visit with him, if you choose that.
Safe journey and look fwd to hearing how your visit went! 🙂
Peace, Maz
Jen,
I missed your comment above and I just can't believe what an awesome group of people we have on this site. I am so excited for you and I can't wait to hear how it feels, what it is like and on and on. I read these posts and cry at how lucky we are to have each other and then I cry because I feel like I am not helping my little boy — the emotions are so intense.
Just know that I will be thinking of you especially on the 26th!
Sue
[user=1274]luvmywonderfulkids[/user] wrote:
…I cry because I feel like I am not helping my little boy…
Chin up, Sue, you are helping him by doing all the research and leaving no stone unturned. You are there for him!! You will get to the bottom of this and Ryan will heal.
Take care (and be easy on yourself),
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?
[user=1274]luvmywonderfulkids[/user] wrote:
I missed your comment above and I just can't believe what an awesome group of people we have on this site. I am so excited for you and I can't wait to hear how it feels, what it is like and on and on. I read these posts and cry at how lucky we are to have each other and then I cry because I feel like I am not helping my little boy — the emotions are so intense.
Sue, I just want to second what Trudi said. Having read your posts, it is apparent that you are doing everything you can for Ryan. You are there for him. You are doing tons of research, seeing different doctors and doing everything you can to try and get him well again. And you will eventually get to the bottom of it. So please try not to be so hard on yourself because you are doing a great job being his mother and his advocate!
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