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Post by Tammiem2pnc1 on Oct 18, 2019 20:56:51 GMT
You don't know how to handle it? Almost a year ago I was diagnosed with a life threatening disease: atypical hemolytic uremic syndrome (aHUS). I have to go to the cancer center every 2 weeks for infusions. I'm there for 4 hours, come home and sleep because of the infusion and the benadryl. Honestly I am so tired of going to the cancer center, tired of having a needle put into my port, tired of blood draws, tired of it all. I will have to do this for life, there is no cure and no remission. If I don't go for the infusions, we know what will happen. In the last few weeks I was diagnosed with asthma, food allergies to soy, dairy and eggs and I now have Hashimoto's. On top of all that I have Rheumatoid Arthritis that can't be treated so I'm in pain all of the time. I can only take prednisone in very short bursts because I react to that too. Because of the opioid crisis, I can't get any type of pain management at all. I feel like my body is completely failing me. I'm tired all the time, I have anxiety and panic attacks daily. I try to stay upbeat, I smile and laugh and act silly for my kids. But inside I'm so sad and depressed. Obviously, I'm not suicidal or I would stop those infusions, I need to be here for my family, but is this really any way to live? We can rarely do anything out side the house because of my lack of energy, I get very weak very quickly. I can't have a job to help my family make ends meet. I try hard to keep up on the house cleaning, but my DH has to help more than I'd like to admit. He works full time, takes care of me, takes care of our kids, cleans and cooks for us. I feel useless. How in the world do I change my outlook, I'm so used to seeing the silver lining of everything in life? I've never felt so discouraged before, I hate it. sorry for the vent, I just don't want my life to be like this anymore. I want to be happy and healthy and be able to be there for my family! UPDATE: Since I can't really go through and answer everyone individually I thought I would just do an update here and answer as much as I can:. First of all thank you all for your love and support. I really means a lot. My husband and my boys have also been a great support to me as well. I try not to complain to them too much since they have to live with me, but I know they know how I feel. As far as my RA goes, I cannot be treated for that because of the treatment I am getting with the aHUS. The infusion I am on suppresses my immune system, so I cannot be on anything that boosts my immune system. I also cannot take any anti inflammatory meds such as ibuprofen, advil, motrin or anything like that. The ahus has compromised my kidneys. I was on dialysis for quite some time. The kidneys have recovered, but not fully, so I can't risk doing anymore damage. I am on meds for depression and anxiety. I'm on Cymbalta daily and Klonopin during bad episodes. My family and I do a lot together, if not out and about we will sit and watch movies or tv together. Since my energy is low, we will put the top down on the Jeep on nice days and just go for a drive. I have a few hobbies and I try to work on those as much as I can when I have the time and the energy. I am going to be doing a craft show with a girlfriend next weekend, so I've been focusing on getting some things done that hopefully sell. I'm hoping I can do the whole show. My days are really full for the most part. My boys stay home and do a cyber charter school. The youngest is Autistic and needs a lot of support with his classes. To avoid another long story, I will just say for many reasons, we ended up having to pull him from special ed. He's been in it for almost 4 years, so he's quite behind of where the other kids are his age. He's definitely catching on and doing very well, but I must sit with him for all of his classes to make sure he is taking the proper notes and screen shots. ODS is okay doing school himself, he's 15. He goes with me every other Tuesday to my infusions and sits with me while doing his school work and DH works from home and helps YDS with his classes. I have thought about therapy, but not sure where to fit it in my schedule, but I have been looking for support groups and really haven't found anything yet. Once my RA doctor found out my about my aHUS and that I couldn't be treat for the RA anymore, she basically released me from care. I will talk with my hematologist about possible pain management or palliative care. I never really thought about either of those, I just deal with the pain. scrapmaven thank you so much for all your advise, sorry you are going through terrible health issues too. Yes, I am a cat mom. The little girl in my avatar picture is the youngest of our 3. We got her just a few weeks before I was diagnosed. I spent 10 days in the hospital and honestly thought she wouldn't remember me when I came home. Turns out she ended up being my little support cat. I had to spend about 2 months sleeping on the couch because I didnt have strength to get upstairs. She stayed by my side and slept on me all of the time. She still does that. She seems to know when I need her most. Thank you again everyone and I am sorry for any of you who are struggling with your health, work issues or whatever life is throwing your way! Tammie
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Post by scrapbookwriter on Oct 18, 2019 21:04:23 GMT
I’m so sorry. I have no suggestions, but sending you {{{{hugs}}}.
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Post by Delta Dawn on Oct 18, 2019 21:05:34 GMT
There are Peas here 24/7 to listen to you. We are your best girlfriends and you are loved and heard.
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Post by tc on Oct 18, 2019 21:12:44 GMT
I'm so sorry. I truly am. I wish I knew you in person so I could help.
I hear you mourning what could have been or the version of your life that you know you can't have. It's natural. As trite as this sounds, give yourself permission to do that.
Then - and I'm working on this too - focus on what you can do. Can you spend 10 minutes tonight playing a board game with the family? Can you restart a favorite book and enjoy the sentimentality of that? Can you make out a list of 5 things you want to try to do next week, next month, next year...: journal every day, make a pie, get family pictures taken, etc? Just one thing at a time.
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ashley
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Post by ashley on Oct 18, 2019 21:13:26 GMT
That is a huge amount of stress and burden you’re dealing with. I have no advice — just gentle hugs.
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kate
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Post by kate on Oct 18, 2019 21:26:09 GMT
I'm so sorry you're carrying such a heavy load. Nothing I say can make it lighter for you, I know. Please feel free to come here and vent any time - sometimes that helps a little, at least for the moment. And tc had some really good ideas. In my own journaling, I am tying to make sure to recount at least two successes, even if I feel like I was a "zero" that day. It doesn't fix my failures, of course, but it does remind me that I'm not a complete zero.
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valincal
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Post by valincal on Oct 18, 2019 21:29:38 GMT
I’m so sorry...that’s a helluva lot to deal with! Sending hugs and I hope something comes along that gives you relief. Take care.
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scrappert
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Post by scrappert on Oct 18, 2019 21:31:59 GMT
I don't have any words of wisdom, but I couldn't just read and not comment. I can't imagine at all how you are feeling and dealing with everything. It sounds like your husband is there for you and in that you should take some comfort. Hugs to you.
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craftykitten
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Jun 26, 2014 7:39:32 GMT
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Post by craftykitten on Oct 18, 2019 21:33:16 GMT
I'm sorry. I can hear your pain and distress. I wish I could give you magic words to make it all better I do understand how you're feeling. Do you see a counsellor, or have any kind of support? Chronic, life changing illnesses are hard to get our heads around. Sending you much love and a big hug.
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Deleted
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May 3, 2024 0:13:45 GMT
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Post by Deleted on Oct 18, 2019 21:33:17 GMT
You can get pain meds, demand them. Depression from constant pain is REAL. My husband suffered from that, and started crying because the pain was so bad.
and gentle hugs.
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Post by scrapmaven on Oct 18, 2019 21:33:46 GMT
Though my disease is much different, you just wrote my story. I'm often too tired or too weak to do anything useful. This moring I spent 45 minutes out shopping and now I can barely move, because I'm so exhausted. It's a relentless, day after day existence. So we must find ways to be happy.
Accessing a port hurts like the dickens (btdt w/TPN) and just seems so unfair on top of everything else. I get to go to the doctor just to hear that there's nothing they can do. There's no money for research, etc. Then I throw a 24 hour pity party and then I focus on what I do have. My RSDS is your RA. I have a few dhronic issues, as is often the case, but my biggest one is the scariest and most problematic. So, I get it.
There are things you can do for pain other than opiods. Have you discussed biodynamics for your RA? I know someone who is getting relief from it. I do acupuncture weekly. It will not heal me, but it helps me to handle the symptoms and treatments.
Do you see a therapist who deals w/illness? It's a critical part of my self care. For one hour each week I can fall apart, talk about how angry, scared and sad and useless I feel and how to cope, despite my limitations. For the most part I handle my illness w/humor and I try and focus on the positive things in my life. If not for my stupid illness I'd have a great life. One thing I don't like is pity or sympathy, but empathy is very supportive. Also, don't tell me that if you had to live my life you'd kill yourself. I've heard that a few times and each time it's more horrible and tacky than the last. I respond accordingly. Like you, if I wanted to kill myself I would have done it long ago. We want to live.
So, here is my suggestion: Focus on what you have to live for. Find little things that you can do. On your good days(and yes I know that we don't really have good days) do something little for yourself. My new goal is to fill my time w/more interesting things than just staring at the tv or surfing. There's just no energy for anything on many days. So, I took up knitting, something I can do in my recliner. I have other little hobbies, but am often too tired to pursue them. So, I do the little that I can. I can clean my house to a point. I can't scrub stuff, but I can do light housework. I had to let go of the guilt about that, because it's not laziness. It's illness. Dh never complains. The guilt comes from my own shoulds.
Keeping your support system alive is vital. On Monday am's I meet a group of my friends at Starbucks. When I'm unable they come here. When I'm in the hospital, locally they visit there. Talking to my friends makes me feel normal. We're all recent empty nesters who have bonded since our children were in elementary school. They've watched me slide down the razor blade of life and I know that I have a crew of supporters. If you don't have a social system then it's time to put on in place. Even online you can find support groups and friends who share interests. Avoid the complainers and look for people who can be positive even when facing such trials.
Looking at your avatar I see that you are a cat mom. Currently, my one of my two kitties is sitting w/me. That is a reminder of how much love I have to give. He makes me feel loved, too.
I have often said, I don't want to die, but I don't want to live like this. Sound familiar? I read that in your post. Somehow, I've managed to be happy. I live my life in moments, not in big gobs of time. Take things day to day and sometimes hour by hour. Happiness is very possible, even when you face such serious illness.
Just my .02cents.
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mich5481
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Post by mich5481 on Oct 18, 2019 21:34:47 GMT
If there is any way you can get to the Mayo Clinic to see a pain doctor, do that.
Also, fight with your doctors to get decent pain medicine- it is possible to still get them.
I'm so sorry you are struggling. One thing you may want to explore is nonmedical treatments - stuff like journaling, yoga, acupuncture, or even massages to help with the pain.
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Post by tryingtobewise on Oct 18, 2019 21:45:46 GMT
That is a whole lot to deal with and I'm very sorry you are faced with it. I think breaking things down (everything - chores, pleasant things, etc.) into very, very small chunks or goals is often helpful and gives one the feeling of getting things done. Best wishes.
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Post by librarylady on Oct 18, 2019 21:47:41 GMT
I am sad to read of all this. I'd be discouraged also.
Have you (or your doctors suggested) tried CDB oil? I took a friend to her pallative care doctor and he suggested that for her. It is supposed to help with anxiety and the pain from the illness.
I send a hug.
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Post by LavenderLayoutLady on Oct 18, 2019 21:58:10 GMT
I can hear the frustration and pain in your voice. Big hugs, my pea friend.
First, i would recommend pursuing pain meds, even if they've already declined you before. You may have success if you first see a therapist who specializes in helping patients who have constant pain. They may be able to recommend to a medical prescribing doctor that pharmaceutical pain relief will aid in your mental health as well.
Plan something to look forward to. Every day, every week, every month. Reading/listening to a chapter of a book. Meeting with a friend for tea or lunch. Working on a hobby. Seeing a new movie (theater, on demand, streaming).
Physical limitations do not determine your value. You are a mother and wife, and they need your presence. Their lives are enriched just with you being a part of it.
I'd like to mention you are also an awesome part of this community, and i look forward to your posts.
Previous posters have given you lots of good advice. Just know we are here for you.
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Montannie
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Post by Montannie on Oct 18, 2019 22:02:58 GMT
Sending you digital hugs. You're allowed to vent.
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Post by winniegirl on Oct 19, 2019 0:07:15 GMT
No advice but I'm so sorry you're having to go through this. Good luck to you.
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Post by quietlycrafted on Oct 19, 2019 0:45:18 GMT
That is a helluva lot to be dealing with, and perfectly understandable to get discouraged and worn out. Maybe finding an online health support group or online/phone counseling so you don’t have to leave the house. Or even searching for blogs and YouTube channels of people dealing with chronic illness that help to feel not so alone. Have you taken DH with you to any appointments? I just posted on another topic about a John Oliver segment on Bias in Medicine (quick search on YouTube will bring it up), and even though it makes no sense in this day and age, you might get more help for pain if he comes with you, as explained in the John Oliver segment. I’m so sorry you’re dealing with this!
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pilcas
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Post by pilcas on Oct 19, 2019 0:54:03 GMT
I am so sorry. You have been dealt a rough hand.
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Post by ntsf on Oct 19, 2019 0:56:20 GMT
would you like any cookie or cake recipes? our family had soy, dairy and egg allergies and so I grew up with never having those.. along with many other things. otherwise.. I just send you hugs.. maybe you could write a blog about what you read, or hobbies from the chair or something.. just as therapy... or keep a diary.. your children may hold that precious in the future.
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Post by flanz on Oct 19, 2019 1:00:23 GMT
I'm so sorry, Tammie. I have been very debilitated at stages in my life, one lasting two years, so I understand some of what you are going through. (((HUGS)))
re: pain meds: I am NOT a doctor but please speak to yours about combining Advil and Tylenol for pain. When I had a root canal issue recently on the 4th of July, the dentist on call told me they no longer give opioid drugs for pain, but rather the Advil/Tylenol combo that I mentioned. I recently took the same combo for a foot injury after a podiatrist made it 100X worse. I don't think you can do high doses of the NSAIDs for very long stretches of time, but they might be a tool for you pain toolbox?
Wishing you all the best! And yes, please come here when you want / need to!
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Post by destined2bmom on Oct 19, 2019 1:32:00 GMT
Huge hugs and prayers to you. Please know that we are all here for you.
I think that you have received great advice. I would definitely talk to your Doctor about pain management. Also ask him about natural remedies or vitamins that may help build your body up. And I wonder if you could check with the social worker at the hospital to see if they have a program that would help with housecleaning costs and respite care costs for you and your husband. Also, see if you have any neighbors who could help with the kids or even a high school girl that could come in and help you. Sometimes having other people in the house helping you and talking to them may brighten your spirits.
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Post by hop2 on Oct 19, 2019 1:40:36 GMT
Hugs
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PLurker
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Jun 28, 2014 3:48:49 GMT
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Post by PLurker on Oct 19, 2019 1:50:54 GMT
I'm sorry you're suffering so much with your infusions and everything else.
Not being healthy sucks.
Hugs to you.
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Post by refugeepea on Oct 19, 2019 2:06:06 GMT
Because of the opioid crisis, I can't get any type of pain management at all. You are so drained and that's just one more thing you have to fight for! Can you get a friend or family member that will be your advocate and go with you to an appointment?
Also, don't tell me that if you had to live my life you'd kill yourself. I've heard that a few times and each time it's more horrible and tacky than the last. I respond accordingly. That is cruel. A woman told me she would kill herself if she had a child like mine. I haven't gone through the terrible physical illnesses as you and the OP, but I like your advice. For other reasons, I try to live my life in the same way; very small doses.
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moodyblue
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Jun 26, 2014 21:07:23 GMT
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Post by moodyblue on Oct 19, 2019 2:07:01 GMT
You already had to deal with a major life-altering illness, and now you’ve gotten more crap stuff thrown at you.
I think it's totally normal to be mourning the life you can’t have, the life you used to have. One of the hardest things about and kind of grieving is realizing that this is forever.
I think scrapmaven probably had the best words for you, as she also deals with so much.
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Post by dewryce on Oct 19, 2019 3:01:42 GMT
I am so sorry, that’s a lot and certainly more than one person should have to bear.
I would recommend Cognitive Behavior Therapy for this and for pain management. They will help you learn to reframe your way of thinking. Gentle hugs.
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Deleted
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May 3, 2024 0:13:45 GMT
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Post by Deleted on Oct 19, 2019 3:36:32 GMT
You don't know how to handle it? Almost a year ago I was diagnosed with a life threatening disease: atypical hemolytic uremic syndrome (aHUS). I have to go to the cancer center every 2 weeks for infusions. I'm there for 4 hours, come home and sleep because of the infusion and the benadryl. Honestly I am so tired of going to the cancer center, tired of having a needle put into my port, tired of blood draws, tired of it all. I will have to do this for life, there is no cure and no remission. If I don't go for the infusions, we know what will happen. In the last few weeks I was diagnosed with asthma, food allergies to soy, dairy and eggs and I now have Hashimoto's. On top of all that I have Rheumatoid Arthritis that can't be treated so I'm in pain all of the time. I can only take prednisone in very short bursts because I react to that too. Because of the opioid crisis, I can't get any type of pain management at all. I feel like my body is completely failing me. I'm tired all the time, I have anxiety and panic attacks daily. I try to stay upbeat, I smile and laugh and act silly for my kids. But inside I'm so sad and depressed. Obviously, I'm not suicidal or I would stop those infusions, I need to be here for my family, but is this really any way to live? We can rarely do anything out side the house because of my lack of energy, I get very weak very quickly. I can't have a job to help my family make ends meet. I try hard to keep up on the house cleaning, but my DH has to help more than I'd like to admit. He works full time, takes care of me, takes care of our kids, cleans and cooks for us. I feel useless. How in the world do I change my outlook, I'm so used to seeing the silver lining of everything in life? I've never felt so discouraged before, I hate it. sorry for the vent, I just don't want my life to be like this anymore. I want to be happy and healthy and be able to be there for my family! I'm sorry you are dealing with so much. Is getting on disability a possibility for you? It may not bring in a lot of money but it would help hire someone to do some of the household chores if you wanted them to. Do you do anything to treat the RA? I have RA too. I know that pain. And RA brings its own level of fatigue! Some days I hurt so bad I can't move. What I've recently learned is RA is commonly concurrent with anxiety/depression. It may have to do with inflammation in the brain. I don't take opioids for the RA pain but I am on a regiment of anti-inflammatory meds (sulfasalazine and methotrexate) As long as I keep the inflammation down the RA pain is better. I try to minimize the amount of night shade vegs I eat as well. Some people have an issue with them and they are my most enjoyed vegetables (tomatoes, potatoes, peppers of all types, eggplant) I also see a psychiatrist for meds and a psychologist for cognitive behavior therapy. Those help with the pain issues as well. No idea what your infusions would prevent you from taking to treat the other issues. But it is worth talking to a rheumy and psychiatrist about your options in treatment for those conditions.
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Post by annabella on Oct 19, 2019 3:37:00 GMT
I’m sorry that sounds incredibly challenging.
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Post by Sanibel on Oct 19, 2019 3:50:20 GMT
Have you considered group therapy? This may help better than individual therapy. And pain management! Oh my, you deserve pain management!
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