I haven’t been on here lately and I’m sure that some of this has been touched on, as is my story but I wanted to recap and get some thoughts
It’s been about 11 and a half months since my rupture, of the brain aneurysm I didn’t know I had.
I’m 43 male live with my parents. I was a traveling photographer that worked on school semester basis. So when school was in session I was on the road. It always made my mother nervous as I drove alone and worked in teams of 2. But I loved it. My mom always has a million questions and it annoys me. I’m now to the point where it’s easier for me to answer with I don’t know then move on but she thinks I’m losing my mind.
I’m back to work part time at the office for a few weeks now. I’m glad to be back and work is too. I’m doing fairly easy stuff now just to get out of the house. But I want to start shooting pics next semester which will start January/February and at that point I want to be able to be full time.
I saw a specialist today because my potassium was dangerously low and when I went for my follow up in august with my surgeon I fell when I got home the same day and ended up back on the hospital close to having a heart attack. They can’t figure any of this out but the new meds they have got me on are doing well.
But I take them three times a day and have to eat with them.
I want to lose weight but it’s about impossible at this point. I quit drinking alcohol but switched to NA beers which are very good. I eat. I like sweets and cheeses and pastas and all the stuff you shouldn’t eat. But I can’t take up smoking or marijuana or anything else to let off steam.
The other day I picked out a pie that I wanTed which was pecan and then I overheard my mom telling my dad how bad it was for me. Basically I’m almost diabetic and that is the worse pie I could pick out….
I told the specialist today I have noticed I can’t multitask like I could. He says I’m getting older which I am, and I didn’t do much for almost a year but it wasn’t like this before.
At a legion meeting I was taking notes and I wrote down May 10 instead of December 10 for no reason. Someone else caught it and they didn’t care but that bothered me that things like that happen.
The other day at work I was talking to a couple people when I was taking my morning meds. I took my afternoon meds instead and didn’t realize till after I took them. That is why I don’t drink. It’s almost happened before but it did happen finally. I didn’t tell anyone what happened but it bothers me.
The drs recommended me starting part time. Also since I’m part time and wasn’t working I have Medicaid to supplement my isnurance , which is big. Because I have all these appointments and scans and meds it’s very costly. In January I’ll be getting new insurance and like dad said I’ll be paying high deductibles without Medicaid as when I go back full time I’ll lose that coverage. So they want me to stay part time and keep the Medicaid. I’ve applied for social security but I’m sure that will be denied.
So basically I don’t know if I can handle working full time, I don’t know what to do with insurance. And the drs say that I can go back and work and do what I did. But mom and my bosses boss don’t want me to travel anymore. And the HR at work is very strict on getting my neurologist to approve everything and he is very loose on his approvals. He basically thinks I can do whatever.
Also I’m in debt to credit cards from before and now more. I didn’t call banks and tell them that I’m out of work because I don’t want them to take the cards away from me. And I don’t care about money anymore. If I can work full time I’ll continue to pay things off. If not I’ll have to do whatever.
I just want to be a 43 year old guy. Meet women and not be roommates with my parents. I love them and appreciate them but it’s almost like jail for me.
The dr asked today if I get lost driving around or noticed anything else. Which I don’t so that’s good. I can always find my way. Don’t need gps to go to the store or anything like that.
I appreciate you guys. I wanted to find counseling but that hasn’t happened because I don’t know what my insurance is going to be and that was the biggest thing at this point when I tried to look was what insurance will cover
Good to hear from you again! Sounds like you have a tremendous amount going on health wise not to mention work, and insurance. For your diet, I really like the Mediterranean diet or try the diet found on the American Heart Association website. I’m really not a fan of the term “diet” I think of whatever I eat as my diet. It’s what a dietitian taught me before I ruptured so I stick with the broad sense of the word. It’s getting colder, but are you still finding a way to exercise?
Trying to get on Social Security Disability was for me finding that elusive needle in the haystack and it took me a couple of years after I went through all my work benefits and then on to private pay insurance. However, one of my colleagues had a simple concussion and received her SSDI within about three months. She was able to do far more than I could but had went to work for a friend who wrote a letter explaining she could not stay on task, forgot simple things and could not remain employed.
I found out through my disability lawyer that our State did not have a box for SAH so they use the ischemic stroke boxes to check off. He also said I would have most likely been approved if I did not have a higher education and worked in a factory. I was finally able to get it after I called one of our Federal Senators and spoke with his Health Advisor. What I should have done was heed the women’s advice at the local Social Security office and went and hired a disability attorney right away as they told me I would be denied at first. I didn’t listen unfortunately.
Social Security sent me to a therapist outside my county so BH had to drive me. There was a family fighting in the waiting room and by the time I got back to see him, I was a mess. He had to turn all the lights off so I could get my words out and he was angry to tears because he also said they would deny me and thought I should get it.
The Medicare insurance or your private insurance you have now may cover for a therapist, reach out to your provider, both of them. Don’t second guess what they will or will not provide, it’s a simple phone call and they may cover 8 sessions which is what mine covers so I’m going by that. When I worked, that insurance covered 12 sessions.
Multi-tasking really does have a wide definition. I think it was my last review that the supervisor said I couldn’t multitask because I wasn’t running criminal history checks whilst taking a report. A colleague could but the reports she took showed it. One cannot ask pertinent questions while focused on running criminal history checks, we only had one computer at our desk. When I went to get my Neuro Psych tests done, the Psychologist said I could multitask which helped me immensely, emotionally speaking. For some unbeknownst reason that bothered me a lot after I ruptured. One of the things I haven’t been able to do since I ruptured is to listen to more than one person speaking at a time, it overwhelms my brain.
To get a date wrong is not a big issue, people do it all the time that haven’t been what we’ve been through. However, to get your medication wrong may be more of an issue, it depends on the medication. My Dad used a pill box with morning, afternoon and evening sections and each day of the week. He filled it up every Sunday with one of us helping. He also wrote on top of the lids of his medicine what they were for. I found out a few months ago that if the MD, PA, or NP doesn’t put it on the prescription they send to the pharmacist it can’t be put on. So now, I get all my doctors to put on the prescription what it’s for, especially the PRN ones that I don’t take every day.
Those are my thoughts anyways, hope they help…
There are two good ways to see if any of your medication is effecting other issues - go to the medication website and look up all the side effects, even the rare ones or an easier way is to ask the pharmacist and they’ll look it up. I remember decades ago, I was on a medication that the FDA removed, yet I was still able to have it filled. An RN that was teaching a class told me it was taken off the market, called the pharmacist and they told me to throw it out. This was way before the age of computers by the way.
Hey Rick,
Merl here from the modsupport Team, good to see you back
She’s your Mom, that’s what Mom’s do. My Mom lives in a totally different country. I haven’t lived there for 30+yrs and she still has those million questions. A few months back I informed her more surgery was likely… …that ‘million questions’ turned into ten’s of millions, all in rapid fire succession. It annoys me too, but she’s your Mom. She’s going to worry and you can’t stop it (They all do it).
@Moltroub makes some very valid points here SSDI can be that
and
I tried to deal with it all myself, ohh what a mess, my application was declined. I appealed it. The appeal was declined. Then I got the disability lawyers involved. They dealt with it all and my application was then approved.
I too wanted to return to my former profession, but after many failed attempts, I had to accept it wasn’t going to happen. In hindsight, my trying to return to ‘normal’, too soon, set me back, then a further brain injury set me way back, to the point I’m now unable to return. I completely understand the financial restraints, but by the same accord, I also know the outcome of not taking the time I needed to ‘fully’ recover. I kick myself every day for not taking the time my body needed.
As for your medications, you could speak to your Dr, but as you say some can be a bit blasé sometimes. You could also discuss it with the pharmacist, it’s their role to know the interactions of medications and the influence they may have.
Hope it helps
Merl from the Modsupport Team
Thank you both… in general I feel like I’m ready and able to work. I found out yesterday there are some local shoots I can go on next week. Which will help me determine if I can do it or not. But then I found out today that they want my dr to approve me being around flashes and taking photos. I have been to concerts with crazy light shows and my work knows it and luckily that hasn’t bothered me. If music is too loud I put in earplugs.
As for my approval, the neurologist takes forever to respond and I usually have to go there and call after for a response. And this semester is running out of time. I know work doesn’t want to be liable if something happens to me. But I also know the drs think I should be able to do anything. As I have tried to tell people I don’t know how things will go for me until I try them and get used to them.
I drove home in the rain and was bummed out. I came in the house and laid down. My mom asked if I had a headache which luckily I don’t. Just needed to relax and try to think things over.
I have to make decisions on attempting full time and getting insurance changed soon. It’s now December 1st. The part time work I’m doing now is going to run out. I need to prepare for the coming months.
Thanks again guys
Hey Rick,
I did too. I thought I’d built myself up/recovered enough to return, but then when placed under normal work conditions all day, it all added up. Come the weekend and I was absolutely fried. Trying to maintain my work routine AND manage symptoms, it all overwhelmed me. My only suggestion here would be to try and increase your workload incrementally rather than going part time direct to fulltime. Give yourself some time to be able to adjust to the load in steps.
Have you found strobe lights/camera flash has any effect? Even a mild one? Do you have any history of seizures? If the answer is ‘No’ the workplace may accept a PCP’s approval and you may not necessarily need a neuro/specialist’s appointment. The employer is covering his own insurance risks. If you have a ‘medical clearance’ that’s often all they need usually.
Please do let us know how it all goes.
Merl from the Modsupport Team
Rick, the squeaky wheel is the one that’s oiled, get on to the doctor. Call a couple times a day if needed. However, I agree with Merl, maybe your PCP or Neurosurgeon can write the release, I don’t think they care who signs it, as long as the person has MD behind their name. Every company I have worked for requires the return to work release, it’s not a big deal, usually. Which doctor gave you the release to work part time?
I now have my surgeon, neurologist, a new primary dr and another new specialist who is a kidney heart dr. They have all given me the ok to return to work and agree part time was a good start. They all have said they will sign release in the past. But it’s all very vague as they like I don’t know what I can and can’t do. They just look at my charts and think I should be back to normal, but realize I have gone through something most don’t survive from.
Last night I was out with a friend and we went to a bar I had never been to. My friend is going through a divorce and he knows all that has gone on with me. I’m fact as soon as he heard he reached out and then came to my house and told me about the divorce as we hadn’t talked much in quite a while. Anyways, I think he had some family history of an aneurysm so he was quite interested in what was going on with me…. Last night we were talking to the bartender who said she was originally from New Jersey and so we asked what brought her to upstate New York and she replied her grandfather died from a brain aneurysm. To which I said I have one and my friend said how I just returned to work. She was amazed. I know how lucky I am to survive but sometimes I wonder how or why I did.
One of them should have the ability to fill out the release form, stick to your guns. I had a release to return to work when I was still in NSICU. It was sometime during my second week. Obviously couldn’t return to work hooked up to all their gadgets. I hadn’t even had permission to get out of bed to walk around yet,
I think for all of us here who have survived a rupture we wonder why. I’ve met a few people over the last ten years that have had family members not survive. Some are amazed and some get angry that I did and their loved one did not. I learned to brace myself for the occasional anger outburst. I also learned to share that medical science has improved leaps and bounds which no doubt helped me to survive. BH’s Granny had what we believe to be a ruptured aneurysm in 1960 I think it was. She was about 43, had a horrible headache and left the cotton mill to go home and lay down. The doctor in the small village came by a few hours later and drove her to the hospital. Granny had a craniotomy as they weren’t doing endovascular method yet. She had a metal plate installed and when it would heat up, she talked about the oddest things. Had to keep her out of the sun, especially in Summer. She lived another 42 years or so.
If I know the person has a religious belief, I tell them that I don’t know why God allowed me to survive, it’s above my pay grade, but I imagine either I still have a purpose or He doesn’t want to answer my plethora of questions yet. I have a lot of questions.
Vague? Ahh, yes. They’re vague because the workplace/insurer is placing the responsibility back on the Dr. Some medicos can be of the opinion if the hospital released you and you’re not symptomatic, then it’s OK to return. But some pcp’s want a specialist to OK it. Let the specialist take the responsibility. For some patients the daily work stresses/workload can all be a bit much. This is often why they suggest part time, to get us back into a cycle and see how it all goes.
I did the part time return, for about a week, but when I went fulltime and it all caught up with me. I pushed myself too hard, too soon, something went POP and I ended up back on the surgeons table. Ahhh, don’t be doing that. We ALL want normal, we all want to return to normal, but sometimes that desire can need to be tempered down. That recovery thing sometimes takes time and patience.
P.S. I’m not very good with the patience bit 
Merl from the Modsupport Team
Crazy story about the granny….
So found out this week that I am losing my health insurance through work since I haven’t worked most of the year. I’m doing part time and will lose it at the end of January.
My case worker through the hospital set me up with insurance and Medicare through Ny state based on my current wages.
So I plan on staying at work but my job will change. Right now I am doing shipping orders which is about the simplest thing they can have me do. But that is getting caught up and I will have some time off which for the holidays will be nice but again not making any $. At this point I have realized work isn’t everything.
But going forward we work on a seasonal basis and so I’ll have summer off again which is good but will lose unemployment… and at this point can only stay part time especially due to insurance.
So my boss wants me to be a what we call ‘firefighter’ which as things pop up and scheduled change they travel for a short time to cover things that come up. But I can’t do it on a part time basis as the hours wouldn’t work and I also don’t want to fly on a plane if something is needed in an emergency…
But there is also a need for retouching which is I would sit at a computer all day in the office and work on photoshop. Not ideal but I think I can do it and I should be able to do it part time.
After I talked with my social worker who asked me if I had been declared disabled ( which I haven’t yet) I did get an appointment scheduled for end of February with drs on behalf of disability/social security, I made an appointment with a disability attorney. I meet with them this coming Wednesday. A friend of mine who has Ms and can’t work used the same attorney, so I was going to talk to him too.
It’s a very good plan to have a disability attorney. Don’t forget your employer can help with getting SSD by writing a letter explaining why you cannot work. SSD does allow you to earn a small salary but be careful you don’t go past their allowance. Have you filled out all their paperwork yet? Part of the paperwork is giving permission for them to get all your medical records.
For some reason, I didn’t get my letter saying they accepted me. We paid for private insurance for months. I had to go see my PCP and was informed BCBS of NC refused to pay. I was quite upset and couldn’t understand the very kind woman who was trying to explain but she was using words I no longer understood. I called BH very upset, BH talked to the woman and we found out I was on Medicare which is why they wouldn’t pay. She found out I’d been on for about six months. It made me madder than a hornet because they sure accepted my monthly payments. They refused to pay back the monthly premiums because they “don’t do that”.
About a year or so later, I started getting phone calls all the time to go through Vocational Rehabilitation. The company who kept calling said that I’d get what SSD pays me until I could work full time. When I said no, one woman asked why and I explained in my words that I get two disability checks because I get State disability due to me working for local government and I would end up losing half of what I earn. She checked, agreed I would and said they wouldn’t call again.
I wish that Voc Rehab in NC could be started as part of the early stages of trying to get disability, I think it would be a much smoother and faster way to obtain it. In the end, it wasn’t my rupture that allowed me to get it, but my lumbar surgery that I had the year prior to the rupture. The disability attorney said apparently the PT who did my return to work evaluation did a wonderful write up which took me out of returning to any type of factory work. He also told me the higher educated one is, the harder it is to get disability.
BH just told me that my Medicare is free because we live in a rural county, so that’s good for me! I use United Healthcare because that’s what my parents used. I’ve never spoken with a local representative for Medicare Insurance. We do have to pay the small charges for all my doctors and only one or two prescriptions are outrageously expensive due to the tier group they’re in. With careful budgeting it’s more than doable.
I’ve flown many times after I ruptured with no ill side effects on my aneurysm. A few days after my third coiling with the ballon assist, I flew from NC up to DC to help lobby with the BAF and The Bee Foundation. I had BH with me but the return flight was by myself and I didn’t fair cognitively as well due to other passengers and the fact the airline folks at the gate forgot about me. I developed DM and could barely walk so lobbying was out of the question and then we dealt with the pandemic so again no lobbying for us. Maybe one year we can get back up there. I do write to my representatives in DC to consider passing what is known as “Ellie’s Law”.
Speaking of DC, my Congressman could not help, they can only follow what is going on. It was my Senator’s office that helped, so check with yours. Good luck Rick and let us know how it goes for you.
I talked with the attorney. At this time I decided not to hire them as I already have the appointments in place with the drs from social security. The attorneys assistant that I talked with said one dr would be physical and one would be mental then about a month after I should get my answer which is usually a denial. But at that point I will hire them and they will work on getting the denial turned around.
A couple things that was said though, which as I’ve had good times and bad times are worth noting. When talking with the drs make sure to tell them everything that is wrong. You don’t want them thinking things are fine if they aren’t. Also go to every appointment they make even if you think you don’t need to or are getting better.
I talked with my primary dr today, my routine follow up and my mom came in. We talked about a lot. I opened up to her about going back to work, the fact that I can’t do the job that i had and every other thing that is bothering me or that doesn’t make sense. I talked to her about depression and all my meds.
At this point I have to stay on all the meds which she said wont change. She also added something new for me to try that will help with my depression, and expects to take me off one of the other pills. But I’m gonna try this for a month. Then she is going to find me a therapist who can handle my case and not just prescribe me with more pills for depression and anxiety but actually will listen and work with me.
Also when I fell they X-rayed things and said nothing was broken. But it turns out that my shoulder has been bothering me. She had me do some things and diagnosed it as a rotator cuff tear. She said an X-ray wouldn’t show it, an MRI would. She told me some things to do for it. Again I’ll have a follow up next month with her about all of this.
And by then I’ll be training for my new computer job at work which will be part time. Work wants me to be able to do more hours then that and i wish I could, but at this point I’ll don’t see how I can
Good for you Rick! I was only sent to a therapist when I applied for SSD, no doctor involved. I would have thought they’d send me to a Neuro Psychologist but he had his MSW. Most people I know have been denied the first time. I’m glad the attorney’s office explained that to you so you’re prepared. It confounds me to this day why SS will send a person to one of their specialists and then ignore their finding. It sounds as if your PCP is really in your corner and that’s always good to read. Stay in touch so we can learn!