Rob's Disability

$1,335 of $10,000 goal

Raised by 19 people in 44 months
Rob and his wife, Sarah, moved in with me because I needed a sitter and they needed some help with ADLs such as laundry and dishes and other things that required long standing times or bending. As a single mom of three, I needed help with the bills and Sarah's income helped. We have become a family of sorts.

I used to be an LPN and I noticed Rob's weight not sitting right and then his belly started exuding an infection. He told me it happens every few months and clears up on its own. I explained to him that that is not normal and started helping him speak to his doctor about this reoccurring infection. Apparently, for last 8 plus years, health professionals have brushed him off, saying he simply needed to diet and exercise more. For the last two years, I have been helping Rob advocate for medical care for this infection. Only now that he has been hospitalised for it, has anyone actually looked to discover this huge weight and belly are a massive pooling infection that he has been fighting off for so many years.

The treatment will be long and while it goes on, Rob and Sarah have no income as her fibromyalgia has put her out of work and she is fighting her health insurance. Rob can't babysit for me, so I can't work. No one else will accept the small amount I can afford. Our household is quickly getting behind in bills and rent is due.

Rob and Sarah have received poor health care for so long while doctors ignored the signs of their health issues. Their health has now affected their income. They have become family to me and my children and we want to keep everyone together.

On top of bills, there's the gas, parking, etc. to keep some one with Rob to help make sense of the medical information and keep him calm and distracted. The stress of the bills is having him go out of his mind. We all will have to move if we can't get help soon. Only because of this, he has given me permission to pos this and ask for help.
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Quick update because it's awesome! Sitting at the allergist, their scale goes over 500lbs. We try this. 497!!!!! He has lost 50lbs in mostly fluid in only 4 months. His calves aren't wrapped today and they still look almost normal! I am totally doing a happy dance!! :-) :-) :-)
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Still waiting for disability and things are still at a stand still. I'm sure everyone is just tired of it just not going forward and all. I know the utilities are....they are not happy at all! I can only pay so much while attempting to feed everyone's specialized dietary plans.

Rob's doctor is on vacation for a couple more weeks so we are having to manage his blood sugars on our own. This is because he's been dipping below 5 now. Worried that he was going to go too low, we've halved his metformin dose and he's now at "normal" of 5-6. This is considered absolutely normal. As the fluid is coming off (and it is!), and we've been avoiding certain odd triggers, his body seems to be calming down and healing. His legs are almost normal looking in the morning and not that far off normal at night. He now has proper compression wraps for the day time and they've been helping a lot! It took a long time of keeping the pressure on the nurses from homecare who kept the pressure on his doctor, but we have forward momentum. At the last doctor's appointment, the doctor actually got off his chair, came round and looked, actually LOOKED at the fluid filled portion of Rob's belly. He wants it drained and so he's contacting a surgeon he thinks can help drain it and maybe excise it somewhat. Dunno, but I think I can get a little excited about what this could mean!! :D

Sarah's health is still problematic since the tests have come back with sleep apnea (we thought this might be an issue) and some sort of gastro issue. Apparently, part of the problem she's having is that she's not getting nutrition out of her food (which I promise is FULL of veggies and low fat proteins). She sees a specialist this year. Date is for December, but we're on the cancellation list. The specialist she DID see for her fibromyalgia has referred her to a pain management group to help bring her pain levels down. Right now, shy of drugging her into oblivion, she's at max doses of everything.

I'm slowly bringing our household out of the red financially, but disability's slowness is not helping. It can't come soon enough. Getting just a bit more each month is the difference between eating and having the electricity to run Rob's c-pap machine. It's kind of weird to know that breathing and eating are becoming options in a world so full of "opportunity".
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Updates are slow because there's little going on beyond a lot of hurry up and wait.

Today, we found a great option for Rob so that he might have a better quality of life...maybe even get back out to some camping and SCA events!

This item would help him gain a lot of freedom to go to friends' places, go camping, get to SCA events without electricity or hauling a generator. Until we can get his size down from the excess fluid and swelling, he's pretty much guaranteed to need his C-PAP. It remains to be seen if he needs it beyond that. He wishes to get in on this deal that looks like it really is going forward!

Later today, we have an appointment with a circulatory surgeon. I don't know if this is a person who does work with lymphedema or not. We'll find out this afternoon. The home care nurses have been helping with the wound care on his leg and helping push for tension/compression stockings or wraps. So far, Rob's doctor has flat (stated as much) refused to order any because he's leaving it up to the specialist. He has refused to do anything beyond refer to specialists we have demanded. He is getting very upset that we are not accepting of his simple answers. His demeanor and tone have an edge to them and he's impatient with our exploration of options for Rob and Sarah.

On Sarah's side of things. We have a kind of win today. Again, their doctor refused to check for some things, including her vitamin D levels, even with my requests. The specialist she has finally gotten in to see was confused as to why and ordered the tests. Today, that same specialist took time out of his day specifically to call her and insist she be taking 3000IUs of Vitamin D immediately as her levels are particularly low. I feel vindicated somewhat.

Sarah is going through some other lab work to see why she is not able to adequately eat. Her doctor was very unhappy when we asked for allergy and other tests for her and Rob to make sure there weren't other factors causing complications to their health recovery. He still refused allergy tests for Sarah, though he agreed for Rob. He is insisting on waiting for the lab tests for other things for Sarah. Again, always looking for the simple, immediate solution, never curious on being sure that there aren't also other things going on. If nothing comes of the lab tests, Sarah will have to wait even longer for the allergy referral to complete.

Still awaiting word on if they get accepted for disability. I hope it's soon. Hydro and Fortis are making noises of making our summer a camping experience here at home. It's a good summer for this, if it has to happen, but it will suck when we try to restart things come Autumn.

Rob's blood sugars are lowering almost on their own. Again, it's for reasons not quite known as he consumes dark chocolate and honey and other "sugars" that are more natural and he's suddenly into normal ranges with little change up. Apparently, not all sugars are created equal. Or his body is rejecting modern chemicalized "foods" and reacting badly to when he consumes them, showing as elevated "stress highs" for his sugars. These are just my opinions and not really following anything diagnostic and such, but it is part of what we are trying out to see about bringing down the swelling, inflammation and sugars. He definitely is looking/feeling healthier.
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I know it's been along time...not much changed until recently.

First, Rob's legs are at least not getting worse. The wound is slowing it's healing, but the good news is that I bullied the doctor into getting wound care for it, so now we have that being monitored and such as of today! :D Yay!! Apparently, I have been doing exactly what they would be doing :D But they are sure that better compression would be the best help to up the circulation to that point. Best news is that by doppler, they have found he has excellent circulation in his feet and thus he just needs help getting the fluids out of his tissues! They are going to help us get the compression next week and Rob FINALLY has a specialist appointment mid-June! Yay!

Financial situation still sucks. They're doctor had the forms for over a month and had promised them repeatedly. When Rob and Sarah finally got an appointment to an advocate to fill their portion out, we had to go get them from him. He hadn't even gotten started. *headdesk* He really doesn't get that he's holding their source of food and shelter in his hands. We are choosing healthy food over paying the bills and it's going to back fire on us since it could be another 2-3 months before this all gets sorted out. We have asked Sarah's recent specialist if he will but he won't until he's finished HIS assessment and that won't be until August because he only has so many appointments available and he's sent her for more complete bloodwork and a sleep apnea test.

Yes! Sarah has finally started seeing a specialist for her fibromyalgia and he does agree, she has all the symptoms....and then some. So more bloodwork and tests to find out what is making this get worse. She sooo hates needles!

No word on the specialist for Rob's cellulitis. We have to check in with that soon. He's not losing any girth that we can tell, so he won't be able to fit into any MRI for a long time, if ever, unless we can get into the US for one. No idea what is going to reduce things outside of the surgical removal of the obvious cyst in his right lower abdomen and the cellulite around it. But that requires an MRI to get to....*headdesk*

Blood sugars are dropping fast...we're about to do a test to see if it's the caffeine keeping it above "normal". His sugars have only steadily dropped as we reduced no tea for a week or so, no chocolate, no...sigh. Life is about to get very grumpy LOL but we'll have a bit more info soon :D

We did get in to see the Diabetic Clinic. Our food log and med/sugar tracking thrilled the nurse and dietician. Their only suggestion was to actually UP his carbs because they were concerned he wasn't eating enough for brain health. They were surprised over the weirdness over the honey and dark chocolate not having an effect on his blood sugars, while white sugar and high fructose corn syrup did. They had no other suggestions. It was a very short visit. We'll see them again in July. Contrary to the doctor's belief, we all eat very healthily and the only changes we have made were to see what could bring down his blood sugars and promote his healing from the cellulitis and lymphedema.

Everything else is same old, same old. Still treating his legs until we can get this sorted out. Rob's feeling a little more up to getting out and doing stuff. Helping with some shopping and such. Aaannnd...we wait some more hoping things get better before the bills insist on more than a lick and a promise. :/
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$1,335 of $10,000 goal

Raised by 19 people in 44 months
Created March 23, 2015
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40 months ago
44 months ago
44 months ago
44 months ago
M Vick
44 months ago

There but for the grace of God, go I.

Stef Maruch
44 months ago

I hope Rob gets the treatment he needs. It is shameful how he has been treated by doctors.

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