zella
Pearl Clutcher
Posts: 3,884
Jul 7, 2014 19:36:30 GMT
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Post by zella on Feb 23, 2017 0:26:46 GMT
I think I posted about DD#1, but not sure. She kicked her husband out of (our) house last week. They are planning on going to marriage counseling, but I'm not sure he wants for things to work. So DD and granddaughter, who will be 3 in a month, live with us. I have no idea how she will ever make a living. She doesn't have a GED, even though she is very clever (I'd bet her IQ is about 140). She is also starting to have bipolar disorder symptoms after being fine for years, other than postpartum.
Yesterday while I was in the city seeing my doctor, DD twisted her ankle and actually broke it. She is currently using a boot and crutches, but is zero weight bearing on her left leg, and is supposed to rest it. Granddaughter, Cora, is a very busy kid. So I took care of her a bunch yesterday, and for a couple of hours today. My other DD is chronically ill, and has been particularly bad this last month. She does sometimes pitch in, but I can't count on her.
Because of my IV line, I am not supposed to carry heavy things or do repetitive things like vacuuming and mopping. Now DD can't do it either. Nor can she cook or clean up any mess. The state of this house drives me batty.
I am not any better, physically or emotionally. My differential diagnosis, as of yesterday, is Mast Cell Activation Disorder. Most people with this have very low blood pressure; but there is a small number who have erratic blood pressures, and hypertensive episodes. That's me. Nausea, my absolute worst symptom, is common with this disorder. And it is why my skin flushes so badly. It's like having an allergic reaction, but without the precipitating allergen. It just happens randomly. Doctor started me on Zyrtec daily, Singulair daily, and Zantac twice daily. Different types of antihistimanes that target different types of histamine. I've only done one dose so far, but today I am really ill (dizzy, lightheaded, bad nausea, flushing and very, very depressed). I'm currently getting a bag of IV fluids (at home) to see if it helps.
This disorder is incurable. The treatment may or may not help. I may never be free of these episodes.
Just found out that my chest CT scan that I had done on Friday showed a new lung nodule. This may well mean my sarcoidosis is coming back to life. Radiologist wants a repeat CT in 6 months.
I can't handle all this. I just can't. I don't have any close friends that live near me. I called my mum last week, before most of this stuff happened, and I was very, very depressed. She told me that she couldn't handle my problems, and ended the conversation. I have no other family of origin living in the US (other than my brother, who refuses to have contact with anyone). Hubby is hugely stressed due to large layoffs at his job on top of all the problems at home.
I just keep going back to my mother, practically begging her to love me. I'm like a dog who keeps approaching the person who kicks them because they so badly want to be loved.
I hate my life. I hate being ill almost every day. I hate not seeing an end to this.
If you actually read all of this, thank you. As many of you know, I'm atheist. But I will gladly accept prayers, good wishes, healing energy or anything else. I am so very desperate.
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Post by ntsf on Feb 23, 2017 1:05:01 GMT
hugs and more hugs and more hugs and prayers. and good thoughts. I don't know what to say but I want you to know that we are listening.
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msliz
Drama Llama
The Procrastinator
Posts: 6,419
Jun 26, 2014 21:32:34 GMT
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Post by msliz on Feb 23, 2017 1:06:00 GMT
You and your family are in my thoughts, Zella.
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Post by malibou on Feb 23, 2017 1:13:44 GMT
My heart breaks for you. I will keep you all safely in my warmest thoughts.
J
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kate
Drama Llama
Posts: 5,517
Location: The city that doesn't sleep
Site Supporter
Jun 26, 2014 3:30:05 GMT
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Post by kate on Feb 23, 2017 1:37:32 GMT
What an awful and frustrating situation. Don't feel bad for feeling bad - you really do have an extraordinary amount on your plate.
Praying that you have some moments of sunshine very soon.
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Post by lisa on Feb 23, 2017 1:42:45 GMT
Sending hugs your way.
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Post by mrssmith on Feb 23, 2017 1:56:11 GMT
I hope the meds get easier to take! Sorry to hear you're feeling terrible. Is there a way to pay someone to do some cleaning, if only for an hour or two?
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Post by kels99 on Feb 23, 2017 3:01:41 GMT
Oh gosh, it really is pouring! I'm so sorry.
Is your DH able to do some of the cooking and cleaning? Maybe busy little Cora would like to do some little chores (with supervision of course). Dusting, moving laundry from washer to dryer and out of the dryer, things like that.
I am so hoping that the meds get easier to take and have good results soon!
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Post by txdancermom on Feb 23, 2017 3:08:15 GMT
hugs and prayers for you and your family.
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Post by lovetodigi on Feb 23, 2017 3:15:58 GMT
You have a lot on you, it is not wonder you are so stressed. Can you take some little mini vacations like a few hours to maybe go have a cup of coffee and read, go to a library, go to an afternoon movie, anything to get you away from everything for a little while. Sometimes a little time to yourself can make things easier to deal with when you get back home. I am sorry that you are having to deal with all this, especially when you are having health issues of your own. Just keep in mind that this is not forever and there will come a day in the future when your life will be yours again and the kids will get back to their lives. I am very sorry about how your mother is handling this. I wish that she would realize how much you need her and be there for you. Please take care of you first. The others are grown and need to deal with their own problems while you focus on yours. (((HUG)))
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flute4peace
Drama Llama
Posts: 6,757
Jul 3, 2014 14:38:35 GMT
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Post by flute4peace on Feb 23, 2017 4:31:24 GMT
You know you are always in my prayers! I know you are athiest & want to respect that, but is there any sort of spiritual group or movement that you would feel comfortable being a part of? Even if it's just a yoga group or something like that. I don't really know what's out there, hopefully someone else can offer insight. I just think you need *something* to believe in.
I'm also happy to hear a name put to your symptoms. What is the diagnostic process for the disorder? Is it based on specific test results or more of a general weed-out sort of determination?
What is included in your infusions? I'm curious about if vitamin infusions could help? Although I'm guessing you've already pursued that.
What about homeopathic treatments to go along with the medical? Acupuncture, massage, chiropractic, Chinese medicine etc. There's even a lady in my church who SWEARS by this electrical current hand-on-a-contraption thing. It sounds really hokey but she went from being so sick she couldn't work to feeling better than she has for most of her adult life.
Just thinking outside the box. At this point I think anything is worth trying.
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Post by miominmio on Feb 23, 2017 5:57:45 GMT
Under those circumstances, it would be strange if you weren't stressed. I have nothing to offer but virtual hugs, zella, but I hope they offer at least a tiny bit of comfort.
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Post by gar on Feb 23, 2017 8:39:21 GMT
My heart hurts for you Zella, that's a ridiculous amount of difficulties to be handling in your life. I truly hope you get some decent relief from this medication soon ((hugs))
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Post by scrappintoee on Feb 23, 2017 9:29:52 GMT
Wow....I'm so sorry that now you have even MORE stress in your life !!!! I am SO, so sorry about your Mom, too!!! You've been on my prayer list for a while; and I will continue. I wonder if you could find a support group for chronically ill people? It might really help you to be with people who are going through the same things as you! ESPECIALLY since you have no family or close friends to help you--the people in your group would TRULY understand and empathise with you, and you might make some new friends, too, who will want to hang out and talk in addition to the meetings. Many, many (( hugs )) to you!!!
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Post by LavenderLayoutLady on Feb 23, 2017 10:06:33 GMT
So many, many (((hugs)))) to you.
I am happy you have a diagnosis, but sorry that it is incurable. I hope with the meds that it is manageable.
You have quite a bit on your plate that is not yours, with the strain of your daughters' stresses. It would help you if you could step away from those stresses, even if it were just for a couple hours a day. Any way at all you could just physically get away from the constant drama by going out somewhere (I know your illness might prevent this) or making a drama-free refuge in your own home?
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Post by lbp on Feb 23, 2017 14:49:03 GMT
I am so sorry you have so much going on right now. Do you have any good friends that could come in and help you just a couple hours a day? I wish I lived nearby.
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zella
Pearl Clutcher
Posts: 3,884
Jul 7, 2014 19:36:30 GMT
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Post by zella on Feb 23, 2017 19:55:46 GMT
Oh gosh, it really is pouring! I'm so sorry. Is your DH able to do some of the cooking and cleaning? Maybe busy little Cora would like to do some little chores (with supervision of course). Dusting, moving laundry from washer to dryer and out of the dryer, things like that. I am so hoping that the meds get easier to take and have good results soon! DH is going to have to do more than he's used to. He is being good about feeding himself and not complaining about the state of the house. But he works a LOT. He's learning investing on top of his regular job, so that he can retire and have income. Cora does like to "help," but she's actually been unwell this last week or so. I don't think it was the meds making me feel ill; just that they weren't making me feel any better. I'm doing okay today so far. Was actually able to eat breakfast. I'm just so overwhelmed.
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zella
Pearl Clutcher
Posts: 3,884
Jul 7, 2014 19:36:30 GMT
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Post by zella on Feb 23, 2017 20:00:19 GMT
You have a lot on you, it is not wonder you are so stressed. Can you take some little mini vacations like a few hours to maybe go have a cup of coffee and read, go to a library, go to an afternoon movie, anything to get you away from everything for a little while. Sometimes a little time to yourself can make things easier to deal with when you get back home. I am sorry that you are having to deal with all this, especially when you are having health issues of your own. Just keep in mind that this is not forever and there will come a day in the future when your life will be yours again and the kids will get back to their lives. I am very sorry about how your mother is handling this. I wish that she would realize how much you need her and be there for you. Please take care of you first. The others are grown and need to deal with their own problems while you focus on yours. (((HUG))) Thank you. I will try to find ways to get myself out of the house for a few hours, though it may not be until next week. My mother is pretty selfish. To some extent I get it, that's fine, she DOES need to take care of herself, and she's had two husbands and a daughter die and has a very hard time with this. But I feel that she doesn't come close to caring for me or about me in the same way that she cared for my sister, and that is very hard on me. I don't have good self-esteem, and this just exacerbates it.
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zella
Pearl Clutcher
Posts: 3,884
Jul 7, 2014 19:36:30 GMT
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Post by zella on Feb 23, 2017 20:20:05 GMT
You know you are always in my prayers! I know you are athiest & want to respect that, but is there any sort of spiritual group or movement that you would feel comfortable being a part of? Even if it's just a yoga group or something like that. I don't really know what's out there, hopefully someone else can offer insight. I just think you need *something* to believe in. I'm also happy to hear a name put to your symptoms. What is the diagnostic process for the disorder? Is it based on specific test results or more of a general weed-out sort of determination? What is included in your infusions? I'm curious about if vitamin infusions could help? Although I'm guessing you've already pursued that. What about homeopathic treatments to go along with the medical? Acupuncture, massage, chiropractic, Chinese medicine etc. There's even a lady in my church who SWEARS by this electrical current hand-on-a-contraption thing. It sounds really hokey but she went from being so sick she couldn't work to feeling better than she has for most of her adult life. Just thinking outside the box. At this point I think anything is worth trying. Thank you so much. I'm really not a group person; I am introverted, shy and have social anxiety disorder. Perfect storm for not being a joiner, lol! Also my health is so precarious right now that I can't commit to anything. Even making it to my counselor is iffy (she will Skype with me if I can't make it in person). So the diagnostic process was a combination of ruling out other diseases and having positive test results. I had skin biopsies, and while the number of mast cells was normal, there was some inflammation and some other abnormality. Enough that my rheumatologist feels pretty confident with this diagnosis. Symptom wise I fit, too. After reading a bit about it, I was pretty sure that's what was causing my episodes, so I feel like yes, I do have this. What I haven't had happen, at least yet, is an anaphylactic reaction. Hopefully I never do, but that does happen. Oh, and I also have inflammation in my eye, rectum and esophagus. More indications that something is amiss. I am getting accupuncture. Not able to make it this week, but will restart next week. My IV infusions are just normal saline. The only problem with that is that it has a tendency to lower my potassium levels, which are always low, so I need frequent blood tests to track it. But I get frequent blood tests anyway because I am on a blood thinner, so that's not a big deal. I would like to see a naturopath and see if they have anything to add. But currently that is on hold due to medical bills that are already out of control. The one local naturopath who does do IV infusions doesn't take our insurance. I have ordered a supplement mentioned by others with this disorder (will run it by my rheumy first). Any chance you can tell me what the electric hand thingy is? I'll try pretty much anything.
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zella
Pearl Clutcher
Posts: 3,884
Jul 7, 2014 19:36:30 GMT
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Post by zella on Feb 23, 2017 20:21:54 GMT
Wow....I'm so sorry that now you have even MORE stress in your life !!!! I am SO, so sorry about your Mom, too!!! You've been on my prayer list for a while; and I will continue. I wonder if you could find a support group for chronically ill people? It might really help you to be with people who are going through the same things as you! ESPECIALLY since you have no family or close friends to help you--the people in your group would TRULY understand and empathise with you, and you might make some new friends, too, who will want to hang out and talk in addition to the meetings. Many, many (( hugs )) to you!!! Thank you. I'm going to search for an online group, and also one in person. That is a good idea.
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zella
Pearl Clutcher
Posts: 3,884
Jul 7, 2014 19:36:30 GMT
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Post by zella on Feb 23, 2017 20:30:10 GMT
Thank you to everyone who has been, and continues to be, so kind to me. It really does help.
I can't really afford to pay someone to help out unless I can get my act together and start selling appliques again (I remove appliques and lace from wedding dresses and sell it); DH makes good money, but he's the only one with income, and as I mentioned we have thousands in medical bills, some of which we'll pay from the Health Savings Account, but we also have out of pocket expenses. I have asked for help on FB, and a stranger was kind enough to get diapers yesterday, when I was too ill to go to the store. I have also put out feelers with a volunteer group; not sure yet if they can help me. The few friends I have here are older than I am, and/or have health problems too. So while I can (and have) asked for specific help occasionally, it's not something I feel I can do often. And damn, it is really hard for me to ask for help.
Every day when I wake up, I wake up terrified of what might lie ahead. My anxiety is so bad. Xanax is my friend at the moment, and I'm okay with that.
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RosieKat
Drama Llama
PeaJect #12
Posts: 5,398
Jun 25, 2014 19:28:04 GMT
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Post by RosieKat on Feb 23, 2017 20:36:10 GMT
Oh, Zella, you're right - it isn't just pouring, it's a freakin' hurricane. I'm sorry you're dealing with so much and also can't really get much help. We do care, and I'm glad you're keeping us posted. Still sending lots of healing energy, and yes, prayers your way.
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Post by destined2bmom on Feb 23, 2017 21:46:41 GMT
Zella, I am sorry that you and your family is going through so much! Prayers that things get better soon! I bet Cora is just a sweet, little girl who brightens your day!
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Post by donna on Feb 23, 2017 22:08:33 GMT
I just want to give you a big hug. No one should have to deal with so many stresses in their home.
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mallie
Pearl Clutcher
Posts: 3,253
Jul 3, 2014 18:13:13 GMT
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Post by mallie on Feb 23, 2017 22:08:37 GMT
Just want to send you some cyber hugs and to let you know that we are thinking and caring about you.
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Post by shescrafty on Feb 23, 2017 22:35:45 GMT
I am so glad you come here to update, please know I think of you often. I hope the diagnosis will lead the way to you feeling better.
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Judy26
Pearl Clutcher
MOTFY Bitchy Nursemaid
Posts: 2,834
Location: NW PA
Jun 25, 2014 23:50:38 GMT
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Post by Judy26 on Feb 23, 2017 22:40:51 GMT
Zella, my DD also has a mast cell diagnosis. She has gone from constant flare ups to very few so while it is not curable it is controllable. She has very low blood pressure and that seems to give her the most problems as she does get dizzy and light headed. Here is what I can tell you... take the antihistamines religiously even if you get an upset stomach. That symptom will go away. Exercise lightly every day. Do not miss even if you aren't feeling up to snuff. The exercise will help control the flair-ups. Stress will cause flair-ups so you must practice some kind stress relieving activity. Yoga and meditation can work wonders. Eat a healthy diet with lots of fresh fruits and veggies. Stay away from sugar and preservatives as lots of people have small allergic reactions to them that can be unnoticeable to most but when you are basically allergic to histamines the side effects can be uncomfortable.
Now that DD's mastocytosis is controlled she seldom gets many symptoms. When her lymph nodes start to swell or she starts getting stomachaches she knows to slow down and de-stress. Give it some time and you will feel better.
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tincin
Drama Llama
Posts: 5,368
Jul 25, 2014 4:55:32 GMT
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Post by tincin on Feb 23, 2017 22:50:13 GMT
I'm sorry to hear about the stresses that you and your family are going through right now. It won't be but a few days and your DD should be able to help out more. I've seen people do plenty on crutches so playing with your DGD should be easy enough to accomplish. Right now, more important than a clean house is a happy house. Play with your DGD, watch TV with her and enjoy her. Give yourself some time to heal. I will be thinking of you.
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Post by flanz on Feb 24, 2017 1:20:27 GMT
I'm sorry that things are so hard right now. Sending you love and good thoughts, Zella!
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craftykitten
Pearl Clutcher
Posts: 4,304
Jun 26, 2014 7:39:32 GMT
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Post by craftykitten on Feb 24, 2017 6:15:15 GMT
Oh zella I'm so sorry things are so hard right now. Sending you lots of love.
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