Partners Don’t Get It

Hi Brian ~ Welcome to the “Family” 🙂 What a challange! Canuckgirl gave us a link to a great nursing article and it’s fairly easy to read. Infact my Hero wondered who had been reading my journal ~ ha!

(link deleted by administration)

I hope this works and that it helps. I have made copies for those persons in my life who need a “little more understanding”!! Probably the toughest part is that other people simply don’t have a frame of reference. They care and want to support us, but it’s such a puzzle; even for us 😮
Other’s will be along soon with more advice. Your questions and frustrations are welcome here any time!

Brian,

It sounds like you are caught between a rock and a hard place. For some of us, it’s hard enough for us to try and get our families to understand in some small way, but when it comes to business, things are so much more complicated. Unfortunately, I dont believe there is too much that can be said to others to make them understand better. I know where you are coming from when you talk about your anger and not wanting to sound combative when speaking to someone, I feel like that all the time because I feel guilty for sleeping/fatigue, and I just dont know how to explain it to the family.

But back to the partners …. for the person who constantly tries to assert control, well, we all know that they were probably born like that, and generally if you arent on your toes at all times around them, or if you show weakness, then they gain a foothold, and its never the same again. Its obviously more difficult for you because they do perceive weakness somehow, and its tireing trying to ‘play games’ with them all the time. All I can suggest is to [I]mentally[/I] prepare yourself to speak to them in a [I]low, quiet[/I], and VERY authoritative voice, trying all the time to keep your cool and keep that same tone all the time. Someone once told me to imagine their possible reactions, and practice your reaction/answer to that so that things go smoother (sounds contrived, I know, but it could help). Do you feel that before starting the agenda, you tell them you have something you wanted to discuss with them, and do it then? How would they react if you were to say that you feel angry/hurt (or whatever) and you need to resolve something because you feel it is affecting all of you. Lay it [I]straight[/I] on the table, saying how [I]you[/I] feel i.e. you are angry because you percieve things to be (a certain way)….., not accusing them, but also not apologizing. Just keep that [I]low, quiet, authoritative[/I] all the time. Norb wrote something about how the nerves are attacked that is soooo very easy to explain ..[QUOTE]In CIDP the bad antibodies don’t go away and continue to do damage finding new areas to attack. Symptoms continue to worsen. They are progressive. For some they remit only to come back.[/QUOTE]. I found after him explaining it like that, I even understood it better. Print out or make a slide with just that to explain what is happening to you, and personally, I would say that this is not somthing I would have chosen to happen to me, obviously. Of course, I have sat here imagining the whole scenario play out in my head, and what and how you are going to say things, and of course its easy for me and others to tell you what to do, but, you know these people best. Ok, so now you know how my mind plays this thing out, which you may think stinks 😀 . Please let us know what happens. This is a very stressful time for you, and I can just wish you all the best!

Having someone understand what is going on in this disease is extremely difficult. There are few outward visible signs for someone to see. It is like watching some one with a tooth ache or a head ache.

Some where I have a half page discription(CIDP) which I had out to people who don’t know what is going on. I found that if you hand them any more they will just throw the paper in the trash with out fully reading the contents. I will leave my e-mail address if you want the discription. It is that I am pressed for time today.

[email]kd7rq@charter.net[/email]

Ryan

Brian, i feel really bad for you and i know in a smaller way how you are feeling right now. i went through that type of a situation with my sister-in-law. i’m still having to explain how i feel everytime i am around my in- laws. i got quite afew responses when i asked for others’ advice. i have tried a few and have tweeked a few to fit my needs. the main thing you have to remember is that you are the one going through this disease and they aren’t, nor do they have a hint of what it has been like for you during this time. take a step out of yourself and into the big mouths’ shoes, go through his life problems for a short time, then go through the other partners life in his shoes. while you are in their shoes take a look at your life. you will see it from a different perspective and you will know what to say to them to help them see what it is like in your shoes. i’m not saying it will change them instantly, maybe never, but that isn’t your problem. if you think you have to explain everything to them, from what it is like to get out of bed in the morning to driving home after a late night, then do it in detail. make them feel your pain, your anger at having to adapt to this new normal, make them understand you would gladly change lifes with either one of them. if you don’t lessen the stressors in your life while you have the chance, you will be eatin alive by it. stress is not good for you, it can kill you. don’t be afraid of their response to what you have to tell them, you are only human and so are they. life isn’t always fair, you just need to level out the playing field more. be proud of your accomplishments, your good days and your bad days, because you know the future could change in an instant! take a positive approach in to the meeting with you, and you can’t go wrong. HUGS!!!!:)

Brian, I know some of how you feel. I am a computer programmer and my life is in my ability to think programming through my hands. when I lose my hands, my productivity drops tremendously. however, through all of this, I have researched technology to help me through my days – especially my rough days. I have learned that aids-to-daily-living devices are tools for me to use that allow me to decide where to spend my energy. I know that using ADL devices seems like “giving in” to some folks but let me tell you they are completely wrong. When I lose my hands, I use Dragon Naturally Speaking. There is a legal version of this software that might be helpful to you. you may do dictation anyway, but if you have to prepare your own type written documents it could save you allot of time and energy.
At first, concerning work I had to set up an office here at home with a twin bed in it. I would work a few hours and sleep a few hours. Of course, that meant that I didn’t finish a full days work until later in the evening or night, but at least I didn’t have to push myself until I crashed and set myself back so that I required an entire weekend with only about four hours total of full consciousness and the rest sleeping. Been there and done that. pushing past the point of needing a break and short rest requires us to rest allot longer when we do rest – for me it’s about twice as long.
another HUGE asset I have obtained is a power wheelchair and the attitude that I don’t give a rip what people think when they see me in it one day and not in it the next. we don’t have to explain ourselves to anyone. we know what our bodies tell us. Mine has let me know – if you’re going to be standing around for a couple hours that might be fine. BUT, if you’re going to be walking about for a couple hours – especially when it’s hot and humid and some of that walking is going to be outside – my body tells me “sit that ass in the wheelchair and conserve energy!”
I put these suggestions out there because part of dealing well with people is being at your best. Being at your best means that you get enough rest. I’ve had CIDP for almost 9 years now and I can tell you that ADL devices, power wheelchair, handicap license plate, voice recognition, all of that stuff has been created for us by folks like us and using them pays off. It lets me decide where I’m going to spend the limited energy I have and it helps me get through those tough times when I have to pull an all-nighter for work and I have tools available that help me spend my energy more efficiently.
Shoot, at first, I even had a couch moved into my office and when I began to feel run down, I just shut my door and plopped down on the couch.
I know this doesn’t help for allot of folks and sounds really trite, but folks who don’t understand now – they’ll be understanding in the future, it’s a guarantee
I’m not sure this is helpful, but I just felt like somebody should encourage you to find ways to fight the battle of remaining employed full-time while having CIDP.
Good Luck!

[FONT=Century Gothic][SIZE=4][COLOR=royalblue][B]Right on, Eric!!![/B][/COLOR][/SIZE][/FONT]

Brian: yesterday was a busy day for me so I did not have the time to find or re-type this . but found an old copy in the bottom drawer. here is the hand out note I use.

General discription of C.I.D.P.

Chronic Inflammatory Demyelinating Polyrediculoneuropathy (CIDP) is a rare neurological disorder in which there is swelling of the roots and distruction of the fatty protective covering (myelin sheath) over the nerves. this disorder causes weakness, paralysis. and /or impair motor function, especially of the arms and legs (limbs). Sensory loss may also be present causing numbness, tingling, or prickling sensatioins. The motor and sensory impairments usually affect both sides of the body (symmetrical), and the degree of severity may vary. The course of CIDP may also vary from case to case. Some affected individuals may follow a steady pattern of symptoms while others may have symptoms that wax and wane, with the most severe symptoms occurring after many months or a year or more. One feature that distinguishes this disorder from other similar disorders is the lack of a preceeding viral infection at least three months prior to the appearance of the disorder. In most cases, there is no family history of other similar disorders or disease affecting many nerves(Polyneuropathy).

This definition was taken from Webmd 2004

Ryan / kd7rq

VT, all I can say is I can totally relate. I never found a good way to talk to my co workers about cidp and my job that did not end in anger or hurt feelings on my side. I actually had to threaten the boss with the persons with disabilities act once…..that seemed to put an end to it. But by this time I was ready to go on disability.

Since you are in a business partnership, I do not know if the same laws apply. It is hard enough being sick without worrying about money/insurance, or stress from idiotic co workers that cause you stress. A good doctor will tell you to avoid stress at all costs.

One thing I will suggest: get a letter from your doctor stating the necessary absences due to fatigue and weakness. Let the doctor express his thoughts about your cidp, and give them a copy. There will always be smart ass comments, but maybe this will make them change course a bit. If not, you are a lawyer 🙂 get creative.

Good luck, and keep us posted.

John

[FONT=”Comic Sans MS”]I can totally relate to your situation, why are some people so blind sided. I had a situation last yr my car was rear ended by a pickup truck loaded with a bunch of jerks. The driver backed the truck down the road about 500 ft & drove off, well the supervisor from the company where I work. Came by looked at my car said it wasn’t hurt that bad & tried to pressure me into going on & working instead of going to the hospital to be checked. She wasn’t worried if I was injured or not, all she was worried about was getting the work done. I have had back problems ever since, What the Hell gives with people like that anyway? Sounds like your partners need a reality check on How not to be a bunch of Jerks![/FONT]

Brian,

I am so sorry to hear about your problems with your partners. You may want to reconsider who you are in business with, if this is how they treat you when you are vulnerable. If you are the “rainmaker” in your practice, you are in a good position to move on. Do you really want to spend your working life surrounded by people who will kick you when you are down?

It is amazing how different the reaction to a serious illness is in the business world vs personal life. I experienced this first hand.

I’m an architect and run a small construction company. I found that after I recovered enough from GBS to attempt working again, that the reaction from clients shocked me.

I had postponed some meetings and projects while I was really sick. These were projects for long-time clients who knew me fairly well, so rescheduling was not a problem.

However, when I finally met with them, of course they asked about my illness. I told them very briefly about GBS. I could see the puzzlement on their faces, and some of them actually physically withdrew a step or two, as if they expected me to be contagious!

Now, I was fortunate enough not to have any visable disability or any indication that I had been ill, but the reaction I got was really shocking to me.

I lost two prospective projects that I know of due to client’s uneasiness about my health. I quickly learned to not mention it to anyone else, or if anything came up about my illness to minimize it, and to quickly change the subject.

It was very difficult at first for me to go up or down stairs, so I became very creative in avoiding the necessity of doing this in front of clients.

My voice would start to get weak in the late afternoons, so I learned to schedule client phone calls mid day.

The pain medications caused me to have times when my speech couldn’t keep up with my thoughts, so I learned to keep business phone calls brief and call back later when I was in better control of my speech patterns.

I needed to sleep until 10-11 am, so I couldn’t schedule early meetings. I managed to keep the reason for my morning unavailability known only to me and my small staff.

I found that these strategies worked, but also added a layer of stress to my working enviornment. Thankfully, my staff was very supportive and really stepped up to help me through this. I’ll never forget their loyalty and kindness.

I hope that you will weather this storm in your own business, and learn some things from it. I know I did. Maybe things that I didn’t want to know, but things I needed to know. I’m stronger for it, and happier for it too.

You were smart enough to get through law school, and brave enough to open your own practice, so don’t let this setback stop you now.

I really do wish you good health, and strength to make this situation work for you. Hang in there and let us know how you are doing.

Brian,

I am so sorry to hear about your problems with your partners. You may want to reconsider who you are in business with, if this is how they treat you when you are vulnerable. If you are the “rainmaker” in your practice, you are in a good position to move on. Do you really want to spend your working life surrounded by people who will kick you when you are down?

It is amazing how different the reaction to a serious illness is in the business world vs personal life. I experienced this first hand.

I’m an architect and run a small construction company. I found that after I recovered enough from GBS to attempt working again, that the reaction from clients shocked me.

I had postponed some meetings and projects while I was really sick. These were projects for long-time clients who knew me fairly well, so rescheduling was not a problem.

However, when I finally met with them, of course they asked about my illness. I told them very briefly about GBS. I could see the puzzlement on their faces, and some of them actually physically withdrew a step or two, as if they expected me to be contagious!

Now, I was fortunate enough not to have any visable disability or any indication that I had been ill, but the reaction I got was really shocking to me.

I lost two prospective projects that I know of due to client’s uneasiness about my health. I quickly learned to not mention it to anyone else, or if anything came up about my illness to minimize it, and to quickly change the subject.

It was very difficult at first for me to go up or down stairs, so I became very creative in avoiding the necessity of doing this in front of clients.

My voice would start to get weak in the late afternoons, so I learned to schedule client phone calls mid day.

The pain medications caused me to have times when my speech couldn’t keep up with my thoughts, so I learned to keep business phone calls brief and call back later when I was in better control of my speech patterns.

I needed to sleep until 10-11 am, so I couldn’t schedule early meetings. I managed to keep the reason for my morning unavailability known only to me and my small staff.

I found that these strategies worked, but also added a layer of stress to my working enviornment. Thankfully, my staff was very supportive and really stepped up to help me through this. I’ll never forget their loyalty and kindness.

I hope that you will weather this storm in your own business, and learn some things from it. I know I did. Maybe things that I didn’t want to know, but things I needed to know. I’m stronger for it, and happier for it too.

You were smart enough to get through law school, and brave enough to open your own practice, so don’t let this setback stop you now.

I really do wish you good health, and strength to make this situation work for you. Hang in there and let us know how you are doing.

Brian,

I really do understand your anger and hurt. It must be so frustrating for you.

Now that you know that your partners aren’t interested in understanding your illness, stop trying to make them understand.

Leave your emotions outside the conference room. Approach this partners’ meeting with the same professional manner you use for client meetings. If you get emotional, you will be percieved as weak and on the defensive. You have no reason to be defensive. Don’t forget this.

DO NOT buy into the idea that you are worth less to the firm because of your reduced schedule.Now is the time to point out that you are worth lots more to the firm than the hours you put in. Don’t be shy about reminding them (with statistics to back you up) that you bring in more business than you are compensated for.

You can suggest that partners’ compensation be based on the amount of business each partner brings to the firm. Maybe a bonus (even retroactive) is in order for you.

Point out that the partners’ failure to act in a timely manner, to get the [U]agreed upon[/U] insurance in place for the partners has caused you financial harm. Forget about the physical damage and emotional pain for this meeting.
The firm has some responsibility to you and to the welfare of the firm, to do anything it can to help correct this problem.

If they are concerned about your reduced schedule, perhaps you should suggest that they arrange to get more help for you, either temorary or permanent. This can take many forms.

I hired a personal assistant. Best thing I ever did. This person can take care of the daily personal tasks that eat up your energy reserves, such as taking your car for servicing and gas, picking up the cat at the vet, taking laundry to the cleaners, and anything else that you can delegate that doesn’t require your personal attendance.

Because you have limited energy, this helps you to budget the energy better. You have more energy for doing your work (and spending with family) and less energy you need for mundane tasks. This is in the best interests of the firm.

Perhaps your work responsibilities can shift, either permanently or temporarily,to things that require less time and yield bigger dividends. You seem to be good at generating business – maybe you can withdraw from or delegate much of the actual legal work, and do more rainmaking – generate more business for the firm. You know your business best, so think of some areas that could work in your favor.

If you approach the meeting as a negotiation, you can come out with more compensation, more help, or a better work situation. You will be in a stronger position. Repeat, DO NOT buy their idea that you are worth less, just because they are short-sighted.

Good luck at your meeting, and remember to keep the emotions out of there.

Brian,
Way to go!!!! You did it.

I had to laugh about the Ativan, because I almost suggested taking something before the meeting to level your emotions out, but didn’t know what you might think about that. You are quite right, that’s what they are for.

I hope your health keeps on improving. Don’t forget to keep sticking up for yourself.

Brian,

I am thrilled to hear that your meeting went well! If you were representing a client in your position, you would probably have given the same advice as Suzanne–who has a promising career as an attorney if she ever decided to give up architecture!

I’ve spent nearly 30 years as a lobbyist for non-profits advocating on behalf of uninsured, disabled, and poor folks, and I know it would be very tough for me to lobby on my own behalf were I treated as you have been by your partners, Brian.

Good for you for sticking up for yourself!

By the way, are you on prednisone? I found it makes me more emotional than ever in my life. Great idea to let the ativan take your edge off for the meeting!

Your partners may give rise to a whole new generation of lawyer jokes!

Way to go, Brian !! You did what you needed to and survived intact. Yeah:D

Sharon,

One of the greatest things about this forum is that it gives us all the opportunity to help others.

I’ve learned so much from other contributors, that it’s a pleasure to be able to help someone else.

You are so right about it being hard to be your own advocate. It’s much easier to step back and be objective when the problem isn’t your own.

Best wishes for good health.