I know this is a strange title, but it's what I have been feeling and facing within myself. I'm writing this in hopes it helps someone else, and keeps me accountable.
When first being treated for all my illnesses, I was happy to go to each appointment with the different specialist.
In the last couple of years I have rescheduled most of my appointments whenever I could, because the trips seemed too long, and what new are they going to try anyway.
I started putting myself last even more after dad passed away last August. Neither of my parents would want me going on like this.
There are other specialists I also need a referral too. One is a Gastroenterologist, and the other is a Gynecologist. I need to put on a little courage for the Gastro person, because I remember those type tests.
I want to start taking better care of myself with God's help where I can.
I have gained weight which I have mentioned before just from a lack of putting myself a little higher up in the family.
I want to change all this as I can. Keep me in your thoughts and prayers as you so feel inclined.
Thank you,
susanep
(((Hugs)))
Thank you Joe.
susanep
Good for you. It's hard to make ourselves do some of the things we must, in the hopes that they will help. Especially when there's no guarantee that they will.
But you chosen to keep on trying, and to take care of yourself. That sure sounds like a good thing. Let us know how you're doing, and remember you don't have be perfect, but just try again.
I'm so happy to hear from you, Susan. You have been through several very demanding years - emotionally, physically.
Spring is the perfect time to make a fresh start. It isn't easy to keep up the pace required to take care of ourselves. Being chronically ill is very demanding.
One step at a time, Susan. You are worth it! You've motivated me to put myself first too, so thanks for the nudge!
You can't help others if you don't help yourself. Don't set yourself on fire to keep other people warm. Both cliches, but true.
People who care about you want the best for you. It's good that you are making an effort to put yourself first. I hope your efforts result in improvements.
Oh thank you so much Warmwaters, Carebear, and SunshineDaydream. You have encouraged me. All of your comments are so encouraging.
Stress effects me so much now that I just walk away from it or if my sweet hubby is having a bad day of his own, I will try to be helpful and then just read, watch tv or play with my fur babies. Anything to relax, and smile.
This afternoon I made my next appointment with my rhuemy for early April. I also made an appointment for this Friday with my eye doctor. I had been putting that off until my husband has his insurance reinstated, and going without my Restasis. My vision has been terrible, but partly I'm sure to my diabetes.
So I am trying to be more proactive.
susanep :)
dearest susanep: I totally understand and can empathize with you. I find myself not wanting or really feeling that my recent appts are that important as what new or what else is going to be done to help me "feel better" or improved...I have a sister who has terminal cancer and I am traveling to her State twice per week to help her in her daily struggles and activities of living and having been doing this I almost find my appointments trivial, but I remind myself that I have to take care of my own issues as well or I will be no good to anyone around me that needs me! Also, I want to feel better or improved! It is difficult at times to continue on with our various specialists but it is important to do and we must make an effort to do so! Who knows? One of the specialists may be able to make a difference in how we feel!
Keep your chin up and keep going! Virtual hugs to you and sending positive thoughts your way.
First I am very sorry for all that you have been through.
Second I fully understand what you mean, I still see multiple specialists and sometimes get very tired of going. I even went through a period like you when I rescheduled lots of appointments. i learned from that experience to try and space out doctor's appointments. I also use the online communications tools that all of my docs have, that saves on lots of time and potential office visits.
Beyond that you might ask what it is that could inspire you to keep going. Is there a person you love who you want to spend time with, is there a trip you hoped to take, something that will give you inspiration?
Susan, I am sorry that you are having such a hard time of it. I know that you are emotionally sideswiped because you lost your mom and then losing your dad added to the stress. It is hard to lose a parent because that makes us the old people then. My parents died in 84 and 85---10 1/2 months apart and it was a race to the finish. Once the illness start it seems like every day is a crisis and goes from losing the spouse to decline in health for the parent that is left plus the hospital and nursing home issues. All of this is extremely stressful. It is the worst burnout there is.
My sister and I were both early 40's with kids in school and they were sort of left by the wayside as we dealt with parents illness. My sister laughed after right before dad's funeral (he passed away last) cause she had to clean her car. She worked nights and was on the run during the day, sleeping when she could. She said the back seat of her car was full of McDonalds wrappers that she just crumbled up and threw over her shoulder cause she couldn't deal with even garbage at that time.
That is really the way we are with the illness and death of our parents and husbands also! We sort of act like we have lost our sanity only we haven't. Our body and soul need to rest and recover. Don't punish yourself for the things you can't do. I know the feeling of walking by a lot of chores and just ignoring them cause basically, I just didn't think they were worth getting all in a tizzy over. The passing of a loved one sort of trumps all else that is going on in the world.
Get your health issues taken care of and soon the weather will be warm and the flowers will come up and the smell of spring will refresh your soul. Do the little things that will help you heal and the big things will follow. You name not be the person you were before, but that is not unusual. Especially when a person has health issues and is older and not working. I keep telling my kids that it has been 3 years since their dad passed away and I still don't know what I want to do when I grow up. That is really the way we feel. If we were health enough to wash walls and scrub floors and have a long term goal of getting a job, etc plus feeling healthy, it would be easier on us. As it is we have to take each day as it comes and pray for the ability to persevere. It is really a challenge, isn't it. Hang in there. You are a tough cookie and knowing that your parents aren't suffering anymore is something to cherish. Hugs. Irish
susan, it sounds like you've been through a lot and I am sorry for your losses. We have a chronic disease and that alone can overwhelm. Can't blame any of us for getting worn out from taking care of everybody else plus ourselves. Be kind to yourself, take some time out to relax this spring and just slow down. The rest will come.
Hi Susan,
This is Angeldancer. I have been on reading from time to time but felt like I shouldn't say anything else because of my own situation. I have prayed for you and have stayed hopeful that you could work through so much that has come your way. You are a wise woman and have given so much hope to people like me. I am hopeful that you will be able to push past the unnecessary and work on yourself. I absolutely get it...probably why I am in an awful flare...I don't even know now where the flare ends and feeling better starts. Reading your hopes will inspire me to be hopeful. Your quest for doctor's appointments will push me to pick up the phone when I finish typing here. This journey has been lonely for me but reading and learning from you Susan means so much to me. Like I said..although I am quiet because I don't want to keep whining. I stay in touch and read. You are a light to many of us and if we could do anything to help you, we would be there in a moment.
Peace and blessings,
Angeldancer
Checking in to see how you're doing, susanep.
Hello SunshineDaydreamer,
I am doing better emotionally. I have been keeping appointments now. My last appointment at the Rhuemy he took a lot of blood tests, and it showed my lupus was worse, and I also was now diagnosed with Rheumatoid Arthritis to add to the list.
He put me on Methotrexate, Folic Acid, and D3 by prescription. At first I was scared to death to go on the Methotrexate, but today will be my 4th week dose, and I am doing ok. In another month I will have blood work to see if my white cells are too low, and how my liver is doing being on the meds.
I still stay weak all the time, and can't do much, but I do a lot of reading, and other things that are simple.
I love all of you on here. I read about what's going on here too, and pray for everyone on here daily.
I think I have lost some weight on the Methotrexate, but I am losing so much muscle mass.
Bless all of you and your sweet sweet words.
susanep :)
Susan, I am so glad that you got to the doc apt and they put you on more med. I think you will be pleasantly surprised at the improvement when it starts. It takes time to kick in and everyone is different in the length of time it takes. I know what you mean about loss of muscle mass. It is discouraging but we aren't going to be baling hay so I guess we will survive. Good luck now. Irish
Susan, it is so good to hear that you are doing better. You should be proud of your resolve because you are in the process of mastering the issues that bother you the most and are coping with your Illnesses and what it takes to control them. LIke so many of us, I too cancel too many appointments and I especially don't like new meds or a new diagnonses. Right now I am battling a problem with my throat and the ENT has decided to try Diflucan based on a throat swab so we'll see. But it is something new so I don't like it.
I understand the battle that you fight because all this mess can get overwhelming. But, it sounds like you are well on your way to winning your battle one step forward at a time. Congrats to you. I will be thinking of you.
Susan! I pray this new track you are on gives you much improvement. I was thinking about all the ups an downs we get, the new diagnosis, the desire to just have one day of limited symptoms. I pray for you and I send all the best thoughts your way. I pray this passes soon and the new trend of meds for you work as soon as possible.
Angeldancer
Sorry to hear your lupus isn't doing so well and you got a new RA diagnosis, but it's great that you kept your promise to yourself about keeping your appointment. It's important to catch these changes early to you can start treatment and hopefully prevent progression. Canceling or delaying your appointment could lead to worse results, so hopefully you are better off now than you otherwise would have been. Another thing to consider is someone on a lupus message board of which I'm a member posted that her doctor would no longer accept appointments from her (basically fired her or refused her as a continuing patient) because she cancelled too often. I don't know how common that is, but it would be a shame for that to happen if you like you doctor or there is not another nearby, so more incentive to keep appointments!
Glad to hear you are doing okay on your new treatment plan. I hope your follow up labs next month show some improvement and that you can continue with this treatment.
Do you have enough strength to maybe do chair exercises, pool exercise if you have access or some other kind of light exercise to help with muscle mass? Maybe your doctor will have some suggestions if you ask at your next appointment.
Best of luck and congratulations on making yourself a priority!
I definitely can relate, and have gotten to the point where my attitude is "nobody wants to hear about it anyway". Stopped talking about things with family, and even doctors, cause you get soooo worn down. Your post is a reminder to me that if I don't take care of myself, who will? Gotta try to pull myself out of this slump also....I understand where you are at, and will say a prayer for you. Hang in there :)