Hi Everyone, I hope your week is a good one. I have a few concerns and although I know it's a person by person basis, I am hoping to help with realistic expectations. I was diagnosed in April 2007 with DM. At that point in time I was so weak I could not lift my feet and had to give up getting into a car without assistance, I was probably just weeks away from wheelchair bound if that long. After working with my Dr, and taking various standard meds for the different challenges, we finally did the infusion thing which along with prednisone, was my saving grace. I am extremely sensitive to medicine so now I am just in the finding what med works to keep the flares at bay as much as possible. At what point do you prepare for the next step with DM? I am also diagnosed with Chronic fatigue, Carpal Tunnel, Tendonitis, Fibromyalgia, as well as I believe there is still another underlying issue not yet diagnosed as I constantly feel like a cold comes and goes with constant fever. Dr. says she thinks it's just allergies. I'll continue to agree that we disagree on that one, but my main question here is stemmed from my husband travels a lot for work and I am left home caring for our animals and myself on my own. I live on one coast and family lives on the other at this point. This past week had me in tears with pain so excrutiating I could not stand, sit, walk, lay down, lean - nothing was taking the pain away. I am concerned with him being away with no help around me but I also don't want to cry wolf if I can continue ok on my own as I like my space and independence. Am I in denial? What were your turning points that made you aware you needed someone nearby or walking/lifting assistance? Most days I appear just fine although as you know, the pain never fully leaves, but at least on average I'm still functioning pretty good. I just have those rough spots that concern me or "freak me out" I don't want to jump ahead of the medical issues as if I'm just giving in, but I also don't want to be in denial and put myself in a position I cannot get out of on my own. And, as many of you deal with, there are many people out there that tell you that it's all in your mind or act as if we are making these symptoms up. Mentally is just as challenging when dealing with chronic conditions. Hope this makes sense. Thanks for sharing your experiences on this and again, I know it's a person by person actual application but just seeking generalities on this ~ Blessings ~ Carol
Hi Carol,
This is such a hard disease to deal with and on top of it you have the overlapping ones too! You can always come here to talk about it.
I was in a similar situation when I was first about to be diagnosed, I couldn't get into a car without someone lifting my leg up for me and I couldn't walk far at a certain point I had to use a wheelchair. A hair dose of prednisone and methotrexate did the trick for me. Now my numbers are climbing again so we are waiting on insurance to approve Rituxan because IVIG infusions gave me meningitis (it's always something!!)
My turning point when I knew I needed someone around ( I had 2 points because I have been in denial a few times and probably will be some more), was when I was playing on the floor with my daughter and couldn't get up. She had to run and get her dad to help me. Another time was in the basement when I tried to squat down I realized there is no more "squatting" so I fell down to my knees then just rolled onto my butt and yelled for help.
Oh there were two times I attempted to run in the yard with my daughter and my legs said "What do you think you are doing?" and gave out and I fell hard, once bruising a rib.
I think my "next step" is a cane, and I'm not prepared just yet to go forth with it, I'm not sure how to go about asking the doctor about it.
Do you have family or friends that can help? Is there and MDA clinic in your area? I'm wondering if there are volunteers available through that facility...You probably shouldn't be alone.
So I get it, and I'm sure there are more of us here who do. You're not making anything up, it's frustrating, and there are times I cry or just want to cry, so if there's ever a time you want to talk in private or to the group we are here.
Hugs...
Nichole
Have you been checked for lupus, Carol? It often goes hand in hand with fibro and myositis, and the recurrent fever and respiratory infection thing made me think of it. Our lupus members sometimes go for a long time without diagnosis. You can check the Lupus Foundation website information and see what you think.
Thanks Nichole, crying is sometimes my best medicine to the point of hyperventilating at times. I am not one to break down easily, but this medical challenge journey has taken it's toll on me for sure. I try to be strong and not let anyone see the pain, but sometimes I just can't do it.
After reading your incidents, I recall falling in my front yard while taking the "girls" out early on in treatment, I couldn't get up and I didn't have my cell phone on me. My husband was furious with me for going outside by myself at that point. But, they needed to go out and my mind has a will of it's own. lol.
I do have a cane by the front door, but when I try walking with it, I feel totally stupid because I don't really know how to walk with it. The pain at times goes all the way down my back and legs and so I wobble like a pregnant lady. And, the girls freak out with it which I know they can get used to it in time.
I mean this in a positive way, that It's nice to have others that are experiencing similar life challenges. I try not to soak myself in the negative aspects of it, but there are days I just need to know I'm not insane and someone somewhere understands. I also want to be pro-active with what lies ahead even though I'm believing for a cure in our lifetime.
Thanks for responding. Would love to keep in touch.
Hugs back ~
Dancermom, Thanks for the response. Yes, my Dr. checked for Lupus along with every disease known to man. I literally went thru a year of weekly blood tests after the DM diagnosis to see what was all going on. She also had me go thru the lung capacity and swallowing tests, etc. but on a family vacation last year I almost drowned because I couldn't handle the snorkle but a couple years prior to that I snorkled just fine. That freaked me out! Needless to say, I have permanently hung up the snorkeling idea. It's probably time for me to revisit all those tests again for sure. Blessings ~
dancermom said:
Have you been checked for lupus, Carol? It often goes hand in hand with fibro and myositis, and the recurrent fever and respiratory infection thing made me think of it. Our lupus members sometimes go for a long time without diagnosis. You can check the Lupus Foundation website information and see what you think.
Every person's experience is a little different, but all of us share what it is like to have all the unknowns. My diagnosis did not come easy, but it was a blessing to me. I have had DM for 14 1/2 years, but I think I had it for a couple of years before that. It is never easy to give in to some type of assistance. After a year I gave into a cane and I was in my early thirties. It was embarrassing to me, but it helped so much. My sons were only seven and three then. Eventually, I started to have more difficulty with walking so I gave into using forearm crutches for those times. I have had a chair since the beginning, as my doctor thought it would give me the ability to get out with my sons and do normal things, like go to the zoo. In the house I use a walker with a seat. This is great for using while being in the kitchen. Any big shopping trip or any vacation, I use my chair. Now, though, I am looking into a power one as my arms and shoulders are causing issues. All this has given me independence. It does not mean that I have given in to DM. Assistance has just allowed me to fight it better. Good luck to you with your fight. We are all in this together.
Thanks Dena,
You mention your arms and shoulders are causing issues. I have a difficult time explaining to my Dr that my arms constantly feel bruised. Even my head feels bruised some days in spots. I would be curiuos to know if this is anything you feel in your arms as well? Fortunately the infusions worked and I am still able to walk and for the most part function, but on my bad days, well they are just bad. I also struggle with knowing when to stop because when I feel good, I feel real good. You are correct, the unknowns are the most difficult part of all this. Thanks so much for sharing, Carol.
Dena said:
Every person's experience is a little different, but all of us share what it is like to have all the unknowns. My diagnosis did not come easy, but it was a blessing to me. I have had DM for 14 1/2 years, but I think I had it for a couple of years before that. It is never easy to give in to some type of assistance. After a year I gave into a cane and I was in my early thirties. It was embarrassing to me, but it helped so much. My sons were only seven and three then. Eventually, I started to have more difficulty with walking so I gave into using forearm crutches for those times. I have had a chair since the beginning, as my doctor thought it would give me the ability to get out with my sons and do normal things, like go to the zoo. In the house I use a walker with a seat. This is great for using while being in the kitchen. Any big shopping trip or any vacation, I use my chair. Now, though, I am looking into a power one as my arms and shoulders are causing issues. All this has given me independence. It does not mean that I have given in to DM. Assistance has just allowed me to fight it better. Good luck to you with your fight. We are all in this together.
Carol,
Some days my whole body feels like I was in a fight. It is sore and tired. My arms/shoulders can feel like this, be really worn out, or have no strength at all. At times I can't raise them above chest height. Those are the days I look sort of funny when doing things. This can be caused by doing too much or doing nothing. I just never know. Fear set in years ago when walking became a problem, but I would rather have my arms than legs. I never thought I would say that. Then again, I never thought I would have an illness such as DM. Take care. Maria
Carol said:
Thanks Dena,
You mention your arms and shoulders are causing issues. I have a difficult time explaining to my Dr that my arms constantly feel bruised. Even my head feels bruised some days in spots. I would be curiuos to know if this is anything you feel in your arms as well? Fortunately the infusions worked and I am still able to walk and for the most part function, but on my bad days, well they are just bad. I also struggle with knowing when to stop because when I feel good, I feel real good. You are correct, the unknowns are the most difficult part of all this. Thanks so much for sharing, Carol.
Dena said:Every person's experience is a little different, but all of us share what it is like to have all the unknowns. My diagnosis did not come easy, but it was a blessing to me. I have had DM for 14 1/2 years, but I think I had it for a couple of years before that. It is never easy to give in to some type of assistance. After a year I gave into a cane and I was in my early thirties. It was embarrassing to me, but it helped so much. My sons were only seven and three then. Eventually, I started to have more difficulty with walking so I gave into using forearm crutches for those times. I have had a chair since the beginning, as my doctor thought it would give me the ability to get out with my sons and do normal things, like go to the zoo. In the house I use a walker with a seat. This is great for using while being in the kitchen. Any big shopping trip or any vacation, I use my chair. Now, though, I am looking into a power one as my arms and shoulders are causing issues. All this has given me independence. It does not mean that I have given in to DM. Assistance has just allowed me to fight it better. Good luck to you with your fight. We are all in this together.
Hi Carol,
First, I just want to say that I'm so sorry for your heartache. I know that feeling myself and thank God for the days when I feel like I have it together!
I have been very fortunate in that I have never fully lost the ability to walk on my own, but I have had wipe-outs as well as pain that caused me to need my husband to be my "cane". It sucks.
A major turning point for me was when I had the opportunity to visit the Mayo Clinic, where they also diagnosed me with Fibromyalgia. This was major for me, as the techniques that they taught me (and medication - Gabapentin) to treat the Fibro changed the way that I felt completely.
Once my MTX got my DM under control, the things that they taught me for Fibro really managed my pain. This includes daily stretching, short walks to keep moving, meditation, taking care of myself by eating right and avoiding too much booze, salt and sugar, and being sure to plan out my activity so that I don't overdo it. Today, I am in pain and my body aches - why? I have been drinking cocktails and eating candy all week, I haven't been on a walk in a week or done my stretches today. Totally my fault. Granted, sometimes I can't help it and the DM and Fibro do what they want, but if I can try and prevent it - you would think that I would.
When I first got sick, the first thing that I did was find a great counselor. I quickly realized that my husband needed an escape too, and although we talk about everything - I need to give him a break. I needed someone to vent to and someone to share my fears with, without drowning them. My counselor helps me to give myself a breather, and some credit for what I work through each day. This is my biggest recommendation for anyone who needs support and needs help working through a challenge such as this.
As far as "The next step," I work really hard to stay in the present - otherwise I totally freak out. My mind goes to "What if I can't have a baby? What if I can't walk? What if I can't breathe?" when what I need to do is just focus on what I need to do today - go for a 5 minute walk, do my stretches, breathe.
I have no idea if I answered your question! Haaha! I just hope that I could you feel a little better - you're not alone. It sucks and we all agree!
Sending you a big hug - please let me know if there are any other questions that I can [attempt] to help with!
XO, Maren