Hello every body. Just a quick introduction. I'm Colleen, from just west of the Mile High city.
I was diagnosed about 18 years ago. A couple years later a friend introduced me to something that changed my life. I had been fairly symptom free for thirteen years. Then the nightmare of anybody with auto immune disorder struck. I got a very serious infection, a fresh eating bacteria. It was a battle fighting the infection and the doctors that kept wanting to put me on medications that I had serious reaction to. Finally after the surgeon and my GP told the hospital doctors to let me use my stuff from home I was able to fight off the residue of the infection after they removed my foot and breast. I was doing really good until I had a really bad fall. Now my fibro, RSD, and a new thing, lupus, is getting me down. That is where I am physically.
Emotionally, I'm up and down. After spending two years adapting to learning to walk and do steps and driving, I'm back in a wheelchair unable to even get into the car without help. I'm starting to feel old. I'm only 61 years young. I'm looking forward to getting to know you all.
I hear your pain and I am 62 in the prime of our lives right???
So sorry to hear all that you have on your plate and please know your like family to all of us here.
You really have to look each day as different and try not to dwel on the past days. Trying to make your weekly schedule might help, it has me. Having that schedule keeps you focused and it pushes us to try our best to get things done. Granted we have to be realistic, but I have found it pushes me to do a little more. My doctors said not to sit more than 45 minutes to an hour. She lives by that theory and I have found it to work. D
Getting up out of bed or the couch just for a few minutes even if it is to empty the dishwasher or put some was in is enough. So by trying to do a little every so often tells our bodies to work. If we lay to long it makes it harder and harder to get up.
Well please try to find one good thing in each day that brightens your heart. I realize some days it is hard but I know you can do it.
Hang in there!!
Welcome to the support group. I am sorry to hear about the flesh eating bacteria. That must have been traumatic. I hope you were able to recover a bit before you had the bad fall. It is challenging to have one condition and it sometime takes months or years to adjust to that one condition. You sound very brave. Were you recently diagnosed with lupus or have you had it for a while? Sometimes acquiring more than one condition at a time is doubly stressful. You have come to the right place. 61 is young. Many of us do use canes and other walking devices. A lot of us are young like you. There must be a youthful spirit hidden away-even if you don't feel so young now
I would love to be able to get up for 15 minutes every hour, unfortunately until my hip heals I don't have a leg to stand on. I have practised living in gratitude and normally I'm pretty positive. It has been only since I was injured by the physical therapist that ignored what the doctor ordered and made it so I'm stuck in the chair dependent on others for so much. I'll admit I'm a horrible patient. I'm used to being able to schedule my days, now I'm at the mercies of others schedules. I'm really trying not to feel sorry for myself since my doctor believes that in time I will be back up and walking. There are so many that will never get out of a wheelchair. I just have to be patient with my body, not something I have been good at. I always pushed myself to the end of my endurance. Now if I do that I'll make it worse and end up in this blasted chair permanently.
Okay, I've had my vent and pity party for the day. Thank you for the welcome Ron. One thing I need to be thankful for is that if I hadn't gotten stuck in the chair I wouldn't have had time to find this wonderful site with the great people that are here.
You will learn so much here and the people are great.
You got to hold on!
Hi Colleen ,
I'm just North of Denver , for now. We're moving to Ga soon. Trust me I know the rat's nest of medical care here in Denver. If you are on Medicare/Medicaid it gets even more fun. Is that the word for it , Fun? I've had Fibro for probably twenty five years. They finally gave me a diagnosis four years ago. I'm so sad to hear the things you have been through. There is a very good Doctor in Wheatridge I've been working with. He cared for my Father too, he had M.S. and he's treated my Mom's arthritis. Dr. Phillip Engen. He's a pain specialist, But. A big but there he doesn't rely on ' here take this pill see if it works.' He works with alternative therapy, massage, creams etc. Most importantly he truly listens. My first appt. with him he talked to me for over an hour. He takes medicare, medicaid and about a book of other insurances. Honestly after living here all my life he's the only professional I'll miss. On final note he is always taking new patients.
Welcome to the forum. I hope you find fellowship and help here. Be blessed.
Yes, I know Phillip. I met him years ago before I was living with constant pain from RSD. He got excited when I was able to get off all the narcotics. His then partner Robert Brown was my pain specialist. I had been one of the on call emergency counselors at Lutheran Medical Center. I think that Robert Brown has moved to the new St Anthony's over on Simms in Lakewood. Most of the good doctors I knew from when I was working there have retired or left the area. Some of the ones I wouldn't take my worst enemy to are still around though. I love my GP. He takes however much time you need with you. That is why everybody knows you take a good book to read when you have an appointment.
As far as I know Dr. Brown is at St Anthony. Dr Engen is still on 38th off Wads near Lutheran . He helped me work with my G.P. or rather his P.A. We all no how that goes. I got my medications balanced, I wasn't actually on any narcotics. After watching my Father battle M.S. for 15 yrs. I refused to take them, even when I needed them. He helped me get a more balanced view of pain management as well. So oddly enough I do actually take a mild narcotic on occasion for acute pain now. I'm 45, something that makes it difficult to get serious treatment . I'm " too young to be sick." However I've been wheelchair bound for six years now. It was progressive at first then one morning after a very painful week I woke up with my lower half on fire. When I tried to get out of bed I fell on my face. I had to have spinal surgery which gave me the use of my upper left body back , but I still can't walk. I'm okay with that. For six months I could barely move more than my right arm and head. I was 39 they told me I was seeking drugs , which I never once requested. I was referred to mental health. I was refused further treatment by a neurologist when she couldn't figure it out. She had her receptionist call me. In the end I found a neurologist that took one look at my two year old M.R.I . He said it's this disk cutting off your spinal cord. We have to remove it put in a hinge and etc. Never had so much as an ingrown toenail before that. The evening after the surgery I woke up in less pain than pre-surgery. My entire torso though weak was working.
Then came the ' fun'. We couldn't find a therapist that would work with me. They were all hard toned bodied twenty somes . They came in with the goal that I would ' Rise Up And Walk.' Wasn't going to happen. I'm a paraplegic. That's for life. I didn't have an insurance accepted diagnosis though so technically I was perfectly healthy. My family had to scrape funds together for private therapy. Four years ago I was diagnosed with with Fibro. That started getting me help in the right direction. It was oh wait maybe she's not insane.
My family medical history reads like a med school text book , but they wouldn't believe I was sick. Last year after fighting one Doc after another and a boatload of pure stubborn I was diagnosed with M.S. I've known in my heart of hearts I had M.S. for 30 years. Back to Phillip. All that in place I finally was able to get a referral to see him. He'd been trying to get me in for years. He treated my Father from the time he opened his practice until my Father died. He treats my Mom. In the last less than a year he has solved pain issues I've dealt with for decades. Some with therapy, some with adjusted meds. The last thing he came up with was a topical that I put directly on my surgical area and another injury that will not heal. Within seconds of the first app. it stopped the pain for the first time in years. I do, have and will continue to sing his praises long after I leave Colorado. He is not only a remarkable Doctor in a time when most just phone it in. He is one of the kindest men I've ever met. This comes from a woman that considers Doctors to be a necessary evil. There are a lot of them out there I wouldn't trust with my dog. So at the risk of over working him look him up.
Good Morning, Colleen and Happy 4th of July from sunny SW Florida. You have had your ups and downs…you keep getting up, though, and I believe you will get up again. Keep your head clear. That really is the most important part of this damn thing they call fibro. My lol. I am 54 and was diagnosed with fibro just over 1 year ago. Though my body hurts a lot, I am in the early fibro stages. I am sorry you are struggling so much. Please keep your head clear, hobbies often - find new ones like painting or writing - anything to keep your brain strong. You did a great thing by reaching out here. There are many great people here. Have a wonderrful day!! Jane
Hi Colleen, I have had fm for 13 yrs. and I am doing pretty good right now. I have been able to change my additude and I am walking every other day for some exercise which had made pain a little more bare able. I am going through a separation and divorce so will be moving from Denver to Mississippi. So I have also been busy packing. So sorry you went through what you have been through. I was really sick 3 yrs. ago, been a hard road back so I simpathize. I am 52 so you are not much older so keep feeling young it does get a little better. These people here are awesome. Anytime we are here take and chat later hang in there. Donna
Donna, why would any one leave Denver to move to Mississippi? The truth is that I have never actually lived in Denver. I'm not sure why it put Denver after I put on my zipcode. I love Colorado, I have lived in 5 other states and three other countries but I always come home to Colorado.
I'm sorry about your divorce. Packing isn't much fun in the best of times. Mississippi is really pretty. I just don't like the bugs there.
I'm not Donna , but leaving Denver is easy. I've lived here all my life. We moved here when I was three. I'm 45 now. Denver has become a big, ugly, dirty city full of crime and violence. The economy here is horrible and housing costs are outrageous. My Mother and I are leaving here for Ga in the next couple of months. Colorado is beautiful. Parts of it are achingly so, but no one can afford to live there anymore. We will live elsewhere and visit here.
Well we are all here in different pats of our lives in a variety of medical situation. I appreciate the reply and sending you positive thoughts.
Keep that chin up and always feel free to vent on this site.
Your family here is always here to support you.
Doggie, I know it must seem that I am giving up a big city for the likes of a small town in ms. But like it or not it is home for me. My father never took us anywhere else for vacations or holidays it was always Corinth, ms. I still have family and friends there. You said it HOME can’t help it. Thanks for your reply it does make me laugh, I guess I could go back to Houston, but no fam. or friends. Donna
Ya, I can see the desire for home. Being near family (birth or created) is very important.
I also have seen the Denver area change from an over grown cow town into a big city. The area I grew up in was open fields with streams to splash in, trees to climb, and a lot of open area for a kid to run in. Now the fields are full of apartment buildings and Bear creek is damned up and the places we played are under water. However at least where I live neighbors still say hi and will help you out if you need it. I don't think it matters where you are, there are good and bad people. As I said earlier I have never really lived in Denver in all the times I have have been in the area, I have always lived closer to Morrison. I guess the main thing I love about the area is the lack of a lot of bugs. That being said, I have never lived any place that there wasn't something good about, not have I visited a place that didn't have something going for it. I'll admit New York City you might have to search for it, but the cab driver that took me to the airport was a sweetheart. I think he thought I was a small town girl overwhelmed by the big city.
Hi I love Morrison, we live quite near there. I agree about the bugs, but I will have to deal and also keep 3 little dogs flea free, that won’t be easy! I liked NYC only visited for a long weekend but it was great. I was born in Cicero IL. So I am used to some big cities it is just time to get some peace and quite. Big hugs. Donna
Just wanted you to know that’s it’s actually easy these days to keep cats & dogs flea-free. There’s 2 topical medications that you just apply to their skin right behind their neck, fleas die within 12 hrs and then your pet will be flea-free for 30 days. You don’t need to do anything to the environment.
The first medication is called Advantage and the second one is Revolution. I like Revolution better as it also gets ear mites, parasites and heart worms. You have to get Revolution from your vet but it’s worth it. So basically you just put it on their skin once a month, it’s easy easy and no fleas!
Hi, thank you for the info. did know about these products but did not know which one works better.hugs, d