I am fortunate that I have a loving, understanding husband that helps me deal with this disease. I’m on the highest dosage of MTX that I can take and am still having mostly bad pain and fatigue days. It is a struggle every day to just keep putting one foot in front of the other. My rheumatologist is adding Remicade but because of insurance issues, I won’t start until January.
What I am most hurt and disappointed in, is my grown daughter’s attitude toward my disease. I think it is coming from denial that there is something wrong with her mom. She really hurt my feelings a few weeks ago with telling me that I am ALWAYS tired and ALWAYS complaining about the pain. I know I say sometimes how I’m feeling but I don’t think it’s an always situation. She told me that it makes her feel guilty if I’m so bad off when I keep the grandkids (I keep the youngest one one day a week and sometimes overnight on the weekends). She’s normally a very caring person so I’m really not understanding this behavior. I’ve fried to talk to her but it ended up in an argument ( which we don’t do much arguing at all). So, I made the decision to not say one word about how I’m feeling to her at all. This past weekend, my husband and I took the grandkids back home after an overnight stay. I felt so bad that I wanted to cry. She asked me if I was ok, that I looked tired. I just told her I was fine and left it at that. I’m not being a martyr here, I just don’t want the ugliness that came out of her ever again.
It's tough to deal with a parent's health concerns at any age. My mom has type 1 diabetes, and now is physically disabled due to back problems. It's probably easier for me to be sympathetic without being over the top though, due to my own health problems. You know, is it possible she's concerned about her own health as well? I find it interesting that she continues to ask you to care for the kids, including overnight (or are you offering?). Does she work an overnight shift? Does the youngest NEED to stay with you overnight, as this is probably exhausting.
Usually it's the other way around, but you likely can't change your daughter. You can change your own response to her, but that is all. That's a tough situation to be in, and hopefully you will get some response from the change in medication soon.
Ah... denial from a loved one...it's understandable but sometimes still a shock when it comes from someone whom you think should support you the most. My mom, who suffered with Ulcertive Colitis for many years understands in an unconditional way that makes me so greatful as I always have someone in my life who can hear me moan about my situation... my father on the other hand still has difficulty with the reality of my illness even though I've had it since I was 14 years old and am now 29 and severely affected by the illness. He loves me and wants what's best for me, but he has an unconscious habit of returning to some antiquated place in his mind where my illness is really 'just in my head'... it hurts me when he makes comments about how I shouldn't need extra help or that I wouldn't be sick if I took better care of myself...It really shakes me to the core that my own Dad sort of thinks I am 'faking', but I don't get depressed... it is just his natural coping mechanism. It is at times like this that I spend a good chunk of time re-programming him on what it is like to be me. I often just send him an email of the 'Spoon Theory' as a friendly reminder of what I am always going through however invisible it may be. Maybe your daughter could do with a friendly reminder. It must be harder though being a parent with this illness than a daughter. I look at my Mom as some kind of indestructable superhero and if she has pain from her Osteo-Arthritis it is hard for me even to be sympathetic... we are all human after all, and naturally prone to denial of bad things, but that doesn't mean you should silently suffer to save face. Keep in mind she might just have been having a bad day herself and took for granted her Mom's stresses; shamefully us daughters do that to our moms sometimes. Hope things go better. :)
it is amazing to read about how many with PsA encounter loved ones who don't/won't/can't get it, and it is very hurtful to those of us already dealing with so much.
As Stoney and AnnaW said, you can't change your daughter but you have complete dominion over yourself, your responses and the boundaries you establish to protect yourself (emotionally and physically). Your daughter was very specific in telling you how what you said makes her feel. Perhaps it is time you shared with her how what she says makes YOU feel. "When you say A I feel B." No blame. You might share with her, too, what having an autoimmune illness has taught you about yourself and your limitations. Sometimes by sharing what we know and are discovering about our limits we sound less "complainy" than if we respond to the typical "how are you feeling" prompt.
Good luck as you wait for your January med change. Cheers! ~Jane
I am lucky I have an understanding husband and kids. But I do feel guilty from not being able to keep the house straight or go places. Your daughter needs to understand that she might get this disease. My daughter is 23 and already showing signs of disease. That scares me the most. I am currently on a study AMG827 with success. Try to find a trial in your area thru your doctor. Just remember you have people who care about you and are going thru the same things.
I ma so sorry skz500 that your daughter is causing you such pain. For me it is my mother. I use to think she was in denial about my disease as it caused her pain to think of her daughter in pain. But recently have realized it is not that. My sister is seriously ill (she is in her 50s) and may not survive. My mother is oblivious and very concerned about herself, not my sister. I offered to buy some underwear for my sister during a recent hospitalization and my mother piped up about how she needed underwear and I could buy some for her at the same time. My mother, though close to 80, is quite capable of buying her own underwear or doing a favor for a sick child. She takes trips, drives to see her friends, goes to the movies, church, hairdresser etc. I am coming to the realization that my mother is just incredibly self centered and always has been. And believe it or not it is incredibly painful for me despite being 55. One might wonder why I have not seen it until now!
I am in no way saying this might be the problem with your daughter. I am just saying that for those of us with invisible, incurable, progressive diseases suddenly see our loved ones in a different light. They can either surprise in good or in bad ways. My husband and son have surprised me in wonderful ways. They have really stepped up to the plate and helped me in wonderful ways while being sensitive to my large need for independence and dignity.
I am sending you warm hugs and prayers as you see your loved ones with "new" eyes.
I don't think it's being a martyr at all. Often as mothers or fathers we are taken for granted by our children and their needs...
As I have experienced more pain and discomfort I find it hard to ask for help or share my experience with my family for similiar reasons. My Mom also has psoratic arthritis and has for years...she also happens to be very private and won't tell you how she feels...she prefers to suffer in silence and sorta expects everyone to do the same. I grew up with the "if it doesn't kill you it makes you stronger" mentality. Obviously that isn't the most caring way to respond to someones pain. I think it's wonderful to have an online support group with people that have the same/similiar experience and that can relate to the illness.
I am sorry that you are hurting...perhaps the change you started will make an impact and she will think of it differently and take more notice of your discomfort. I can relate to your post and hope you feel better and get more relief from your new treatment.
Many people don't understand unless they walk in your shoes especially when one looks good. It doesn't appear that they even have a disease. Inform your child that there may be a genetic tendency so she should be more aware as she gets older. Hang in there things will improve. Remicade helped me for over ten years so don't be afraid of the biologics. I have now started Humira and I'm feeling better after two injections. The Remicade wore off after one month. Remicade is derived from animals where as humira is humaninized. It is a trial and error thing with the patient and the meds. You have to be patient. Good Luck.
Thank you all for your kind words and support. I am definitely going to talk to her seriously about the genetics. I think she’s already showing signs (she is 32 years old) of the disease as her doctor has diagnosed her with fibromyalgia like I was 20 years ago. Unbeknownst to me, it actually was PaA and so was untreated until this past April. I did bring up the subject of heredity with her but was quickly rebuked. Again, I think it all boils down to denial. Thanks again everyone!