In case of illness...

[wmacbride]

This is really hard to write, and I feel guilty for feeling this way.

 

I’ve not gotten any better, and am still losing weight and feeling wiped out most of the time. I’ll be getting another CAT scan soon, and my doctor isn’t sure what’s wrong. Right now, she’s considering lymphoma, sarcoidosis or another unusual autoimmune disorder ( these seem to run in my family).

 

Unfortunately, my husband is also coping with a chronic issue. He has psoriatic arthritis ( a form of rheumatoid arthritis) and he’s feeling bad too. The medicine to treat it ( methotrexate…the same drug the used to treat some forms of cancer) is leaving him feeling wiped out, even with the extra iron and folic acid he has to take.

 

I don’t know what to do. I’m really worried about how bad things could get, and as much as I hate to say it, I don’t feel like I can depend on him to help. When I say that, I don’t think it’ because he’s lazy or anything like that. His hands, back and knees have gotten really bad, and I know he’s in pain too. It’s more the situation.

 

For a long time, I was a full time stay at home mom, and my days were always filled with medial appointments for our three kids, helping them with their different therapies, running the house, managing the finances, etc. Due to his job, my husband was away a lot of the time, so it just made sense for it to be that way. Now that our kids are older and don’t need me quite as much, I’m working too, but I work at home.

 

That’s the background, and for a long time, that model worked really well for us.

 

Yesterday was different. We had to get groceries and do some major cleaning ( it had been put off too long already), and there were errands to run and some other tasks that needed to be done as well. My older daughter was at home on her college break, and was able to help me. My husband was home, because it was a short day at work.

 

Due to poor vision, I don’t drive, so he drove my daughter and I to run the errands. We got the groceries, etc. while he stayed in our vehicle and fell asleep. We got home, I put the groceries away. I put the wash in and my daughter and I started the cleaning. My husband did help as much as he could, but then went to bed, as he’s feeling really worn down lately. He ended up spending most of the afternoon and evening asleep, except for when he drove our daughter to pick up her medication at the pharmacy.

 

I am not trying to give the impression that he is lazy, because I know he’s not. For many years, he worked at a physically difficult job without complaint. It’s more that I am really worried about being able to keep this up.

 

It goes beyond just the housework. All of our kids have either developmental or physical issues of one sort or another, and that ends up taking up a lot of mental energy. It’s really hard to explain.

 

I tried to talk to my husband about it, but I don’t think he understands. How do I tell him I’m worried I won’t be able to depend on him to help without making it sound like I’m saying he’s lazy, or that I am blaming him for something he really can’t help? Even worse, I don’t want to make him feel bad or guilty, because, as I said, I know he’s struggling too right now.

 

To be honest, I could just be getting worried for no reason. I have a bad habit of doing that, but I’m just so worn out feeling, and not just physically.

 

If any of you have been in similar situation, what were you able to do to help make it better?

[SolG]

wmacbride, do you have a free veterans counselling service where you are? Where I live a veteran's family, with or without the veteran's consent, can access support counselling and services.

 

I don't think your or his problems are entirely your own. In a miltary context a family serves and sacrifices too.

 

Feel free to PM me. I'm awesome at reseach and finding resources for people to at least pursue.

[healing light]

Hello, I'm sorry that you're going through all of this. I completely understand chronic illness both personally and my late father was, etc. I studied alternative medicine and had patients in school (I'm a licensed acupuncturist).

 

Unexplained weight loss can often be a sign of cancer, so definitely keep up on your doctor visits. Can you tell me more about what's going on?

 

As far as your husband, I highly recommend the AIP diet (the Auto Immune Protocol). You may want to go on it as well since autoimmune issues run in your family. It's an anti-inflammatory diet where you eventually phase foods back in one by one to see which of them trigger your symptoms. Your husband should seriously consider this option, though it takes a lot of discipline, because it can be incredible for autoimmune dysfunction like rheumatoid arthritis.

 

Also, I would definitely have him try acupuncture (make sure it is a licensed acupuncturist with at least 4 years of schooling--dry needling by chiros or pts is potentially dangerous--they basically learn to needle over a weekend course with none of theory) with a good practitioner who is also an herbalist; I treated one woman who had RA for over 20 years and managed to keep it at bay through herbs and weekly acupuncture. No obvious deformities or loss of function in any of her joints, though she did still have some swelling. Acupuncture is not just for pain, though, it's a whole system of medicine in and of itself so you can treat many different ailments, whether the side effects from chemo or insomnia or hormonal disturbances, etc.

 

I don't know how in depth you would like me to go, but get tested for MTHFR mutations since all of your kids have developmental issues. It is very common for families with a lot of autoimmune issues and chronic illnesses to be poor detoxers. You will want to look at whole foods nutrition, organic if possible, and high quality methylated versions of B vitamins. If you do a hair test and determine that any of you are heavy metal toxic (more common than you think), you will want to consider the Andrew Cutler chelation protocol (the safest one, imo).

 

I recommend that you and your husband also soak in epsom salts. The bioavailable sulfates and magnesium should help with pain, tension, and detoxification. Start off small if you tend to be an allergy prone person and work your way up to 1-2 cups in a bath for 15-20 minutes.

 

Hope this helps.

[BaileyB]

Wmacbride,

 

I have no real advice to offer. Just extending a hug to you...

 

Try not to get too far ahead of yourself. Take it day by day. I hope things get better for you.

[wmacbride]

So far, I've lost about 89 pounds, and feel so wiped out that sometimes, it's hard to even climb the stairs. I have swollen lymph nodes, an enlarged spleen, and my levels of certain markers in my blood tests are elevated.

 

It's weird how these autoimmune issues are in my fmaily. My younger daughter has what her doctors are calling autoimmune ion channelopathy. From what they say, her immune system is targeting certain specific ion channels in the cellular pathways in her nervous system. She gets pain, tremors, nausea, dizziness, myoclonus, reynauld's syndrome and she's has optic neuritis too.

 

Lots of meds. have been tried, and IV infusions of immune globulin seem to help the most. The good thing, at least for others, is that some researchers feel that a similar mechanism could be involved in some forms of MS, parkinson's and maybe even some types of mental illness. Her condition is seen as very rare, but these researchers feel it could be a lot more common than anyone realized. She's being followed by doctors all over, and each time she goes for a treatment, samples of her blood get sent all over.

[BaileyB]

So far, I've lost about 89 pounds, and feel so wiped out that sometimes, it's hard to even climb the stairs. I have swollen lymph nodes, an enlarged spleen, and my levels of certain markers in my blood tests are elevated.

 

It's weird how these autoimmune issues are in my fmaily. My younger daughter has what her doctors are calling autoimmune ion channelopathy. From what they say, her immune system is targeting certain specific ion channels in the cellular pathways in her nervous system. She gets pain, tremors, nausea, dizziness, myoclonus, reynauld's syndrome and she's has optic neuritis too.

 

Lots of meds. have been tried, and IV infusions of immune globulin seem to help the most. The good thing, at least for others, is that some researchers feel that a similar mechanism could be involved in some forms of MS, parkinson's and maybe even some types of mental illness. Her condition is seen as very rare, but these researchers feel it could be a lot more common than anyone realized. She's being followed by doctors all over, and each time she goes for a treatment, samples of her blood get sent all over.

 

 

That's an awful lot for one family to deal with... And, there is nothing worse than the worry that you, as a parent, will not be here to care for and support your children.

 

It's good to make plans, these moments remind us to get our affairs in order and do what we can to prepare for the future. But, try not to get too far ahead of yourself. Until you have the answer, you shouldn't assume the worst. Take care.

[Whoknew30]

You’ve got to sit down with & be straight...you can’t worry about hurt feelings, when talking about your fears & worry to your spouse. Reiterate that you don’t feel he’s lazy but you do have fears.

 

What’s your planning for you family in general if anything happens to either one of you? When you have kids that have any kind of disability, there has to be “just in case planning”. My H & I have discussed In great detail what our plan b is in all scenarios. Well one bc of my almost fatal illness right when we got married & with our youngest being on the spectrum, I can’t imagine waiting until something pops up to then worry.

 

If you’re so worried why not already have plans in place to ease your mind? If you’re sick the last thing you need is unnecessary stress...it can make whatever you have so much worse. Speak to your kids, your husband & all work together. Life can change in a second wether from disease, accident,ext...good luck.

[CautiouslyOptimistic]

Are you financially able to hire a house cleaner? Ideally weekly, but even monthly can help a lot. I don't have any health issues (unless you count lower back pain) and I find a once a month cleaning service to be immensely helpful for my stress level.

 

I'm so sorry for all you are going through and hope you can get some help. You really do need to have a talk with your husband about this because you both are not feeling well so together you need to come up with a solution. It should not be all on you .

Edited December 23, 2017 by CautiouslyOptimistic

[wmacbride]

You’ve got to sit down with & be straight...you can’t worry about hurt feelings, when talking about your fears & worry to your spouse. Reiterate that you don’t feel he’s lazy but you do have fears.

 

What’s your planning for you family in general if anything happens to either one of you? When you have kids that have any kind of disability, there has to be “just in case planning”. My H & I have discussed In great detail what our plan b is in all scenarios. Well one bc of my almost fatal illness right when we got married & with our youngest being on the spectrum, I can’t imagine waiting until something pops up to then worry.

 

If you’re so worried why not already have plans in place to ease your mind? If you’re sick the last thing you need is unnecessary stress...it can make whatever you have so much worse. Speak to your kids, your husband & all work together. Life can change in a second wether from disease, accident,ext...good luck.

 

We have wills, power of attorneys and special prvisions for our son, as ven as an afult, he may not be capable of making legal decisions for himself. We've also put money away into special savings accounts, and have provisions in both our willd o provide an income for him as well.

 

Our older two are doing so much better. I don't know what it is about high school and people with aspergers. they often really struggle, but once she started college, she blossomed. She's finishing up her diploma, and has been accepted into a program where she'll graduate form uni. with a degree in both english and law, and plans on practicing intellectual property law. She's also a published writer, and has quite a following. Our younger daughter has been accepted into a program where she'll graduate with a degree with a double major in biology and forensics ( i think), and she was awarded a really good entrance scholarship. ( she had been thinking about astrophysics or engineering, but preferred biology).

 

Our son has started to develop an interest in electrical engineering, and he is really gifted when it comes to computers. I gave up trying to understand what he's doing with them a long time ago ( I consider it a good day if I can get mine to work at all...).

 

I talked to my husband more about all of this. I like having plans in place knowing what's going on. For am long time, during deployments, we accepted the risks he might not come back and had to be ready for that.

[wmacbride]

Are you financially able to hire a house cleaner? Ideally weekly, but even monthly can help a lot. I don't have any health issues (unless you count lower back pain) and I find a once a month cleaning service to be immensely helpful for my stress level.

 

I'm so sorry for all you are going through and hope you can get some help. You really do need to have a talk with your husband about this because you both are not feeling well so together you need to come up with a solution. It should not be all on you .

 

We have put in some calls to veteran's affairs, and with any luck, there will be some programs we can access. Luckily, I used to be on the executive governing board of some military family resource centres, and helped to set up some of the programs that are currently in place. i have some cotacts and first hand knowledge that is coming in quite handy.