Too young to be this weirdly sick

GypsyMama

This is going to provide some details about the crappy crappiness I've been dealt. My family and friends have reached their saturation level with hearing about my illness and I really just need to share with someone other than just DH. I've had chronic fatigue immune dysfunction syndrome since 1996 when I was 32 yo.

Over the yrs the drs have told me over and over that it was a mental condition. The drugs they gave me were all psychotropic and did little to help with the pain, zero to help the fatigue and zero to address the immune issues.

Fast forward to Feb of this yr. I got sick with a cold like illness while travelling on Feb 24. After delaying my return for a week I flew home to Orlando from Colorado on Mar 11. On Mar 19 I was admitted to the hospital with severe lung pain, desaturation and fatigue. Hospitalists treated me like shit and basically said I was having a panic attack. We begged them to do a bronchoscope which they did begrudgingly. I have good insurance do their reticence to treat was baffling.

I was released after a week with no dx but still in pain and fatigue. Long story short they found herpes simplex 1 in my lungs and it was left untreated long enough that it did damage to my lungs forcing me now to be on oxygen whenever I'm exerting. Also in the post hospital testing they found I have a deficient immune system (IGg), parvo b19, 3 other kinds of herpes and Epstein Barr. And I have a partial blockage in my left heart ventricle. And damage to the left ventricle is common in Cfs.

Here's the fucking kicker: I am only 51 years old. People always tell me I'm a young 51 (whatever that means). With all that is happening in my body I feel like aliens have taken it over. I hate wearing the oxygen because people are such dicks and say the rudest most judgemental things like we're you a heavy smoker? No! I never smoked. You look fine you don't really need that do you? Blah blah

I don't know where I'm going with this. I just know I'm fucking angry. And I wish my family and friends could be more supportive. On a good note I have found a renowned Cfs dr just 45 min away. He has started treating me but there are no quick fixes. I'll be on high dose antivirals the rest of my life. He is validating that what I have is most certainly not a mental illness but doesnt hedge in confirming how ill I really am.

My 3 grown kids all have neglect issues and provide zero support. I really just want to smack them.

Sorry for the rant. I just needed to shed some heroes virus a little bit:)

GypsyMama

Herpes virus not heroes virus lol

PurpleFlowers

Hugs mamma. Thats a lot to be going through. Hope you feel better. >:D<

Katescrazymom

I hate hearing how drs very stubbornly cling to a wrong diagnosis. I'm glad you found someone who is treating you properly.
People need to learn to keep their mouths closed. Why would they assume they know why you need oxygen. [-X
Hugs.

Birdie

Hugs and sending prayers your way. It's all I can do.

jezebeldelilah

I understand your stress and I am also very ill with zero support. I have wanted for a long time to start a support group blog thingy. ( I'm not tech smart) but a place similar to this where people can go that have illnesses and disabilities to rant/support and reach out to other people like them.

GypsyMama

Thx:) @PurpleFlowers and @birdie the hugs and prayers help so much. I felt so much relief just writing this post. My mood went up three notches.

@KatesCrazyMom I know! Why would they assume and assign stigma? Isn't that the strangest thing? My Cfs dr says the reason drs are finally admitting Cfs is at least real is because there are a couple of pharmacy drugs to treat it ( neither of which worked for me). He said a disease isn't considered a disease until there is a drug for it. Wth?

@chlomom there is Phoenix rising for fibro patients. It's support oriented but not mom oriented. I appreciate talking about it do much on SM because people get how hard it is to raise kids with this illness or similar disabling illnesses. So in your dream forum what would be your target demographic? Would it be moms with chronic illnesses in general or some with specific dx? Are you well enough to manage something like that if the techie part was handled?

The weird thing about being in this place is that even though my body is flailing about trying to stay alive my brain is going two thousand miles an hour with ideas and my creative juices are flowing overtime. I'm trying to enjoy that in between the episodes of being entirely pissed off.

jezebeldelilah

It would basically be for disabled or sick women that are raising kids. All kinds of disorders. Fibro, MS, chronic fatigue syndrome everything that effects you daily and even cancer. I wouldn't want it to be to specific because I would want everyone that is gimped up to be able to vent and talk. I have a Facebook group of friends we all have different conditions but common problems. Pain, family not supportive medication costs and over all well being. Mainly though raising our kids while dealing with it all. From rheumatoid arthritis to nail patella syndrome we all need support. There are places out there but u cannot cuss or just say how the hell you feel. Its something I have wanted to do since I started getting ill a week after delivering my beautiful baby girl. I felt so alone.

Luvlyssa

:( I'm sorry you had a rough night @gypsymama, there's something in the air I swear it.
It's frustrating when you look fine on the outside... all my illnesses are inside illnesses too. So it SUCKS. "You don't look sick"

really fucker? I feel like fuck and all I need to do is crawl into a dark corner and sleep... that's all I CAN do.

I think those people that get all snotty and judgey are the types that will end up with some horrible physical thing like.. flesh eating bacteria that eats their face off... (I don't wish it. i just think they will)

"Oh it just ate your face off... lets go get lunch! mind wearing this paper bag???"

*hugs* to you...glad you found a doc who can treat it. CF is similar to fibro... until they had meds and a test to it it couldn't have POSSIBLY existed.. geez.

GypsyMama

@KatesCrazyMom @LuvLyssa @chlomom my weirdness perpetuates itself. Spent all of last night in my required monthly visit to the ER. Woke up Wednesday morning with severe pain and swelling in my left knee. I had done NOTHING to warrant such a physical response. I gimped around for 2 days but started getting nervous abt the possibility of a blood clot. Called my drs and they both urged me to go to ER right away. Long story short it wasn't a blood clot but rather bursitis related to my recent onset of rheumatoid arthritis. The ER staff was excellent and treated me very well, a rarity. Why can't it always be that way?

The forum is such a great idea. I have a blog I started in January where part of what I post about is my health. It's free on google blogger to set up a blog. I wonder if there is forum service like this? I know I'm on a Cfs experimental yahoo group that is very active via email posts. It does require moderation which can be challenging.

Do your families support you or give you crap about being ill? Do you gals think you get depressed as part of the illness or because you get no validation or another reason? I'm finally getting validation from my new Cfs dr but also in mainstream because my illnesses have largely transitioned into the severe damage arena and are thus testable.

One thing I read on a drs blog was that drs are trained to 'understand' that people with chronic pain syndromes are manipulative to try to get drugs. That is their mindset when we walk in the door whether we are seeking meds or not.

If you want to check out my blog go to chardalescuriousjourney.blogspot.com

jezebeldelilah

My doctors treated me like I was faking it for drugs. Pills are so bad in this area doctors don't want to treat conditions that require pain management at all. My hubs hates me for getting ill. He calls me a gimped up crippled bitch daily. I have no one else really for support. They have all passed away or my hubs has ran all my friends off. I feel so alone and scared that my dd suffers for my illness. I was to sick to accept my offer into my bsn program for the fall and hope that I can go in the spring. So now I don't even have college. I had a 4.0 that I have carried for 3yrs and awards for academic achievement that just lay in a drawer. This illness has taken so much from me and I hate what my pitiful existence has become. So I'm depressed and in pain daily. Pain makes the depression worse. Sometimes its hard to look forward when your unsure what your health may do to your plans.

GypsyMama

@chlomom I'm so sorry your husband isn't supportive. I totally get why it is hard for the partners because they really have to accept that they lost a lot of the possibilities and co-support that came with us when they first married us. It's a grieving process that can't start until they accept the reality of the illness and the loss. Your husband will never be able to be supportive until he foes that.
My XH was verbally abusive and talked shit about me in front of my kids. They all have valid neglect issues now as adults. I was 32 when I got sick and they were all in middle school. The illness creates such a narrowing of life. I always keep climbing out of the hole it puts me in when I'm feeling at my worst, function pretty well for a spell and then lose it all again with the flares. Going thru that constant loss cycle is excruciating. I am constantly suicidal. I try not to invest any energy in the thoughts but I have to admit it is always there.
I am constantly looking for the purpose of this fucked up journey. It is hard to find a spiritual base without a sense of purpose. What I'm finding for now is that it comes with the tiny connections like now where I can share a bit of what I know not just about being I'll but all the things I've experienced along the way.

jezebeldelilah

I am laying on bed crying because I couldn't take my dd out to swim my left leg is not working for shit. I'm cutting the fucking thing off. On a positive note I do have the most amazing loving doctor whom takes great care of me. When I can afford it lol. My meds are outrageous and I just wish I had insurance to help me some.

GypsyMama

I'm so sorry:( so what is your dx and what is going on with your leg? Swimming is about the only exercise I can do but getting to the pool when I'm feeling bad is tough. The water helps with my anxiety and depression too. What kind of rx's are you on? Are you having to pay full price or are you getting them discounted?

jezebeldelilah

I pay full price. I'm on pain meds, lyrica, cymbalta, valium, ultram and I am starting a new monthly injection to great my m.s. I need an mri and cannot afford it. Shit I had to choose groceries or meds last week.

jezebeldelilah

I'm forgetting something...ok I stopped lyrica for Horizant. Roxicodone is the pain med because I cannot take advil or tylenol I vomit blood from how much I took before starting treatment.

jezebeldelilah

Fibro MS RSD on left hip. Aggressive ms called Devics syndrome. Sciatica and gastro issues.

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jezebeldelilah

What antivirals are you on? Swimming can be such a relaxing experience and therapeutic. I will go to your blog.

GypsyMama

I am on acyclovir 800 mg 4 times a day. Plus I take llysine, spirulina and chlorella supplements as natural anti virals. My dr believes demylenating is a result of a combination of a high viral load and food allergies. I'm doing the food allergy test next week. It costs $700 and isn't covered by insurance. He takes payments or I wouldn't be able to do it. I'm intrigued to see what I'm allergic to.

I'm also on a sugar free, low gluten and only complex carb diet.

What I do for my irritable bowel - and this is kind of expensive but I don't have to be on it all the time - is take Synertek bovine colostrum and a high dose of Jarrow refrigerated probiotic. It takes abt six weeks to control the IBS and then six weeks of mntc and I can go off it for usually a year.

I was going to say for your name brand meds a lot of them have assistance programs if you contact them directly they will often give you that med for free.

@mammaterroll has good questions about family history. I think you said this all started after the birth of your daughter? Usually my dr says that it is a combo of genetics and a traumatic event.

I have been doing a lot of research on supplements because I can't take any of the Cfs/ fm meds and think the medical/pharmacy system is fucked. There is a lot we can do with supps. I'm the poster child for weird side effects too so the pharmas and I don't get along. If you want my perspective on what supplements might help let me know.

Hang in there mama. A day at a time. That's all we get and all we can do.

Also look up the spoon theory on the Internet. It's a good way to describe what these autoimmunes do to us and how we have to manage our lives with them.

jezebeldelilah

I read the spoon theory. Thank you so Mich for that. I absolutely love it. I have shared it with everyone I know. I'm making my hubs read it. I don't know if it will help him but I will try.

GypsyMama

Also if your hubs needs support I know my DH would be happy to email or text with him. He has been so great with me. This is both our second marriages. I was single when I got sick so he chose to marry me knowing I had these issues. He also has twelve step recovery so is used to working with people and providing support and processing.

jezebeldelilah

Seriously you have given me a new found hope. I thank you so much. Please inbox me because I use my phone and it will not allow me to send messages.

GypsyMama

There is a way to pm from the phone. Lesbomom sent me instructions. I'll see if I can find them and send it to you.

jezebeldelilah

Ok thanks.

Emmie

Sorry that you are going through this! Try needymeds.org for options to apply to the pharmaceutical companies for free or reduced medications, geared towards people with no insurance.