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Trying to maintain sense of humor: medium success

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    Trying to maintain sense of humor: medium success

    Hi all,

    I was diagnosed this past May, but probably should have been in 2007 when I had symptoms but no health insurance and opted out of MRIs (good stuff, right?). Context: 29, perma-grad student, hopefully employed in the future. Pretty optimistic about disease, because I've had a few months to overindulge my misery and decide that this could be way, way worse. i.e. I could not be an extraordinarily privileged, overeducated person with gratuitous access to an excellent (uh) healthcare system and a charming family equipped with nurses.

    Been taking copaxone for a month, and the last flare up has mostly gone away so I can use my hands and face again-yay!

    While I am all kinds of unhappy with the diagnosis, here are some things I think are worth sharing/hearing responses to. Discussing them cheers me up, but my friends are starting to roll their eyes, and the nurse that works with my neuro is going to smack me upside the head soon if I keep rambling to her (and she is a sweetheart, I don't want to deserve that).

    1. I am kind of covered in tattoos. And kind of skinny. This means I have like 3 places I can do an injection without it hurting like hell as I stab some kind of muscle-even at 45 deg angle. I've gotten 4 different answers from shared solutions about how close I can get to a tattoo safely. I want Teva to pay me to inject square in the middle of one and see what happens. Think they'll bite? Since they probably won't, anyone with tattoos on copaxone want to weigh in? I've been inching closer and closer to the ones on my hips and arms (like, 1/2 an inch) and so far nothing catastrophic has happened.

    2. Considering how much the copaxone stings if I screw up and any gets on the outside of my skin, I think I have no future need for pepper spray, as I can probably weaponize the stuff and am always carrying it around since I am never home in time to inject myself. This is likely illegal, and that stuff is expensive and not something I'd waste....so. I AM JOKING about this.

    3. The autoject thing is so much more scary than a tiny needle. I have two: shared solutions keep sending it to me even though I've been injecting manually without hysterics for a month. Something that big and loud should at least have a funny shape. I have suggestions-anyone else?

    4. For me, prednisone side effects were worse than MS symptoms. Anyone else? I mean, I'll sacrifice some fine motor in my right hand for a month if it means not feeling like I am ready and willing to kill people. I like to remain nice, and avoiding the steroids is probably a good way to avoid incarceration. That stuff made me insane.

    5. Despite being within normal BMI ranges (a little on the hefty side, honestly) I've had five or six people tell me to gain weight to make the injection easier, and stop working out so much so as to leave a little fat. Compare to a month prior to need to conveniently inject, when all healthcare professionals told me to get off my *** and exercise.

    6. Diet ideas anyone? I've kicked some bad habits (caffeine...was giving me heart palpitations) but cigarettes are hard. Trying to find other ways to be grotesquely healthy (aside from MS) to mitigate the self-inflicted damage.

    7. On a really serious note: I've always intended to adopt/raise a child, alone. I'm really not interested in romantic partners, and having witnessed the family law system, no interest in child-rearing legal sharing. That seems like a stupid idea, now that there is potential for increased disability and no way to know when/how/how much. Am I being dramatic in assuming that now I can never have kids? I mean, is it even responsible for me to raise a puppy if I live alone?

    Thanks for the space to rant; my family, friends, and therapist are by now probably a little sick of me.

    #2
    You sound like a very intelligent person. You haven't experienced all that the MonSter dishes out, yet. Being an intelligent person with tats, you may want to consider the 'Oral' meds (DMD's). As far as smoking, I know it is a difficult habit to break but you really should become a Non-Smoker. As far as child rearing, you may want to experience this disease, and its progression, before you make your final decision. The most important thing that I hope you think about is becoming your own advocate. There is a lot about this disease that you can't learn through reading and you need to experience. Good luck

    Comment


      #3
      Hi and welcome.

      I'm definitely not 100% a healthy eater (though I am vegan) but anytime you can cut out processed foods is good!

      I'm also an ex-smoker, quit 4.5 years ago. I know it's really hard but is definitely good to quit (when you're ready). I used the patch for a week and then stopped when it gave me a rash. Did the rest cold tofurky!

      I don't have any advice about injection sites since I have PPMS (I have low-moderate tattoo coverage -- one full sleeve and a bunch of random ones), but I just read about the copaxone thing and tattoos which sucks!

      Anyway, welcome, welcome!

      Comment


        #4
        My daughter is a reputable tattoo artist. Done properly, the tattoo ink is injected into the Dermis. The Subcutaneous, where we inject COpaxone into, is the layer below the Dermis. No need to worry about finding non-inked areas for your shot.

        By the way, you ARE successfully maintaining your sense of humour, I "LOL-ed" at your post!

        Jen
        RRMS 2005, Copaxone since 2007
        "I hope to be the person my dog thinks I am."

        Comment


          #5
          Cat Mom, what city does she work in? I can no longer get any work done (pain tolerance has changed significantly) but always interested.

          Also, I couldn't help but notice you have a dog pic avatar instead of a cat. (I am a crazy cat lady)

          Comment


            #6
            Originally posted by misslux View Post
            Cat Mom, what city does she work in? I can no longer get any work done (pain tolerance has changed significantly) but always interested.

            Also, I couldn't help but notice you have a dog pic avatar instead of a cat. (I am a crazy cat lady)
            Misslux, she's in Mississauga. Kinda central.

            Regarding the dog pic... I also have 3 cats, 1 is 23 lb and long haired. Takes up the entire pic! Nice to meet another crazy cat lady!

            Jen
            RRMS 2005, Copaxone since 2007
            "I hope to be the person my dog thinks I am."

            Comment


              #7
              Welcome! Loved your post - I have a little bit of experience in grad school myself.

              I don't have a ton to add other than a piece of advice I got from my neuro when I was diagnosed in March. I thought MS was going to quickly incapacitate me because I didn't know much about the condition. I asked: "Will I be able to work?" and he replied: "Why wouldn't you be able to work?" I asked because I was wary of the future, but his response pulled me back into the present. There was no reason, at that moment, why I could not work. There was no foreseeable change coming that would keep me from working. Sure, it may happen, but it has not and there's no reason to worry about an uncertainty.

              I find that MS has forced me to value the present and live in the moment, which is something that type A me didn't like to do previously. But it's been a positive shift in my life. Sure, don't be absurdly reckless, but don't let future fears take away your present joys.

              With that in mind, I would go for it with adopting a child when you're ready. If your health has changed substantially at that point, then reevaluate, but don't concede anything to MS preemptively. Live and love your life

              Comment


                #8
                I believe raising a puppy first is a good idea. they are much like children and its really hard to do alone. Im a truck driver and have had my puppy with me 24/7. now she doesn't like to be alone. so be carful doing that. with tatoos it shouldn't matter where you inject the ink doesn't go that far into the skin thats why they always tell you to watch the sun with tats the fade lol.
                I was DX 3 weeks a go and I have found that my line if work i can't do anymore because of the MS and I wouldnt want a flair up while driving and endup hurting someone other than myself

                Hate to say this but Welcome to MS world

                Comment


                  #9
                  Originally posted by hmarie47 View Post
                  7. On a really serious note: I've always intended to adopt/raise a child, alone. I'm really not interested in romantic partners, and having witnessed the family law system, no interest in child-rearing legal sharing. That seems like a stupid idea, now that there is potential for increased disability and no way to know when/how/how much. Am I being dramatic in assuming that now I can never have kids? I mean, is it even responsible for me to raise a puppy if I live alone?
                  Hi hmarie47! I enjoyed your introduction.

                  This can be a touchy subject (whether to have children), so I'm going to try to be inoffensive here! I'm pretty sure I'll fail…

                  Just so you know, I don't have kids. My spouse and I almost had one—accidentally (oops!)—but we lost it. This was both sad and happy for us, and you'll see why it was partly positive for us when you keep reading. Anyway, I've put a lot of thought into this over the years, and I like to think I take the issue seriously and am well-informed. But as always, I could be wrong.

                  FAIR WARNING: This may hurt your feelings.

                  I'm the kind of person who gets sick when reading all the literature and posts that only ever encourage people with MS to have kids, as if everything's golden for everyone, and you should have a boatload of kids because it'll just make you so happy!

                  I usually keep my mouth shut because it seems to me like I'll get jumped on because this is such a personal issue that everyone else wants to be all sunshine and daisies about. I'm opening my mouth here because you're asking serious questions, and you sound like you can handle a serious discussion, even if it's full of dissenting opinions. Be careful what you ask for!

                  No matter what you decide and what happens, I can't tell you how much I appreciate you (or anyone) actually thinking about whether to have kids.

                  Your plan was to adopt, but I've gotta talk about the non-adoption route to give some context. I may get some flak for this, but I believe that far too many people have kids without even considering whether they should. For some reason (just not arguing with biological impulses?), it seems to me like procreating is simply the unthinking default for most people. It's like having kids is just the popular thing to do, because, um, it's the popular thing to do.

                  I'm not saying it can't be rewarding or anything, or that there's no reason you could come up with on the "pro" side of having kids. I've liked several kids, and of course I've felt that pull to want my own. I'm just saying that it seems to me that most people just assume they should have kids, and don't even consider why maybe they shouldn't.

                  Adopting a child takes a lot more consideration (and deliberateness), especially if it's not after a failure of fertility or virility. Further kudos! You probably realize that the world is way overpopulated, and has far too many fine children that need homes for it to make much sense for (so many) people to keep breeding. (Send hate mail to…)

                  You probably also know that raising a kid well seems to be a really hard thing to do—and I'm talking about with two parents. On the other hand, I don't doubt that one extremely thoughtful, loving, considerate, resourceful, and sufficiently able parent could do a lot better than any number of parents uninterested in parenting.

                  Okay, we're getting to a hot topic now.

                  I think some people assume, again, for whatever reason, that no matter what, they have some kind of a right to have/raise a baby. Further, some people (including one of my friends) who do think about whether to raise a kid think about doing so only due to their own expected benefit or fulfillment. I think that's a horrible, horrible, stinky, rotten, super-selfish attitude.

                  There are already too many people in the world, so I think people should be asking themselves why they're so special that they deserve to bring another person into the world. I'm not into eugenics, I just want a whole ton more thought put into the creation of more people on this crowded rock. Do you think that you can make the world a better place for having your child in it? More to the point, do you think that someone else exactly like you should try to make the world a better place by having their child in it?

                  I know it's a downer in this context, but that's the kind of question I've tried to lead my life by: how do I make the world a better place for having me in it?

                  I don't hate kids. Not without provocation, at least. Apart from overpopulation crises considerations, the reason I feel like too many people have kids is because it's so important to me that the well-being of the kid is put first.

                  The considerations are definitely different when it comes to adoption. If you adopt a kid, can you make it so the kid has a better shot at a decent life than it would have otherwise? That's one major question to consider, at least.

                  When you throw a chronic, progressive disease into the mix, other questions that should be asked should be highlighted. With adoption, you at least don't have to worry about the possibility of passing on bad genes or epigenetic modifications! Anyway, here's the key question I think you need to consider:

                  •Do I have a reasonable expectation that I will be able to care for the kid, or have care provided?

                  I'm not going to tell you that you shouldn't adopt a kid. I don't know you.

                  I will tell you that MS is unpredictable, and it can make life really, really hard. It can blind, paralyze, and stupefy you at whatever age. It could also just make your toes tingle for 30 years before doing anything else.

                  I think raising a kid is hard enough and enough of a responsibility without MS. It probably seems cold to some people, but this decision for me would be partly about considering the risks of being robbed of your parenting ability and ability to provide materially for your kid. Risk assessment involves not only the statistics regarding likelihood of something bad happening, but also the severity of those bad things if they were to happen. You owe it to the kid to think coldly (realistically) about the possibilities.

                  I think it would be very shortsighted to make one of the most serious, decades-long commitments a person could make just because you're okay at the moment, and you want to try to (start to?) satisfy your own life goals while you can. It's not like you're thinking about taking a week-long trip to Spain, where you could even come back early if you weren't having a good time. You're considering whether to deeply commit yourself for years, and years, and years, and there are no take-backs!

                  That said, I think it's probably likely that things would turn out for the better for any kid(s) you'd adopt, were you to adopt them. My understanding is that things do tend to be pretty bad for kids that don't get adopted. Sorry, foster system age-outers.

                  The MS parenting literature is always careful to note that children shouldn't be burdened with significant caretaking responsibilities. You may think that you'll be making lots of money and be able to afford to hire people to help take care of you if you need it. However, you may end up disabled, unexpectedly, soon after your graduate career—assuming it ends! In that case, all that effort in grad school will have no economic reward. (Yep, that's me. )

                  On the bright side, if you were to decide it's not right for you to adopt and raise a kid, you can try to be involved in raising kids, or just be around them. I enjoy watching the kids play in the park when my spouse pushes me around in the wheelchair. My mother-in-law has volunteered for years in the church nursery down the road, even though I don't think she's particularly religious. She just loves the kids. Your family members may have kids, and you might become their favorite aunt.

                  And about raising a puppy: if you're willing to consider adopting a human, why not consider adopting an adult dog from your local shelter? It's not as long of a commitment, they're more likely to be needlessly euthanized than puppies, and their personalities are already formed. Ask shelter staff to help you find one with the right temperament and exercise demands for you; they have their favorites. Be warned, though: dogs are big commitments, too!

                  Stay positive and all that. I just thought I'd provide a sober voice of reason where I usually see people drunk with the dream of an idyllic life. It's just too important not to be honest when you ask.

                  By the way, I'd still talk to you and wouldn't hate you if you decided to adopt a kid!

                  Peace to all…

                  Comment


                    #10
                    now SPMS

                    Do all you can do right now.
                    I had my first Secondary Progressive MS flare in 1997 and have not had a flare up since, that's been 16 years ago. But I was always different I think because I have only had 4 flares in 47 years. I guess that is why it wasn't diagnosed until I was already SPMS, in 2000, and I had numbness and tingling that has not gone away.

                    There was never a good way of diagnosing this disease until the late 1980's, and they began MRI's.

                    I had an allergic reaction to the intravenous steroids and got a bad rash and was sick to my stomach but that was a day after they had already finished the infusions.

                    I am still on Copaxone (did you know it kills fat cells) I have indentions in my upper legs where I did injections, because the fat is gone in that area........Oh gad! can I use it everywhere!

                    I don't know if it works or not as I never had a bunch of flares, so I don't know if Copaxone stopped them or they stopped on their own. I have been told that Copaxone doesn't do anything once you have symptoms like numbness and tingling that doesn't go away.
                    Cheryl

                    Comment


                      #11
                      totally not offended.

                      [QUOTE=bwmorris;1423892]Hi hmarie47! I enjoyed your introduction.

                      "This can be a touchy subject (whether to have children), so I'm going to try to be inoffensive here! I'm pretty sure I'll fail… "


                      Nope, thanks for the reasoned response. I haven't gotten many from anyone I know in real life, who, despite me pushing 30, all just kind of have the "wait and see" answer, or a "do what you want, screw this disease" response while they secretly expect I'll get married (now that it's mostly legal) and settle down with a nice girl who wants to have lots of babies. Unlikely, ew.

                      Although I could just start dating women who want to/already have kids. I love kids; I have wanted to adopt (so as not to overpopulate.....or be pregnant: God bless all who are willing to do that, but I just....no) since I announced that intention at 8 years old.

                      Grad school is a rather fancy law school, so if I wanted to (I don't, being the vaguely anti-capitalist-materialist type) I could make a lot of money. More likely, I'll just have a lot of debt forever but hopefully be able to do something I love for as long as possible. Disability rights law, anyone? Strongly considering it, since if I ever end up using a wheelchair or needing access to some kind of assistive tech, I can look back and appreciate my own efforts.

                      Specifically, I am considering being a foster/adoptive parent to a much older child, in a few years when comfortably employed. I wouldn't want to screw over a kid (who, if in foster care, has probably been screwed over before at least once) by sudden onset of blindness/crazy fatigue/paralysis/all the other crap that could happen though. I guess I'll just see what the totality of the situation is in a few years. It just makes me sad, because right up until this diagnosis my intent (for years!) was to graduate, pass the bar, get a job, and adopt a much younger child. Oh well.

                      Anyway. Thank you for the reasoned and thoughtful (and totally inoffensive) response. I'll be getting a rescue puppy/unwanted, grown up pup (because buying cats and dogs offends me; let's talk about irresponsible overpopulation) as soon as I have a car and a job situation that doesn't involve me being out of the house for 12+ hours a day.

                      Comment


                        #12
                        baby or no baby

                        Hello

                        I am new here too dx 2009 single mom had a baby while in law school.

                        I have to say I adore my boy I was supposed to marry his father who has never seen him.

                        I thought I would be able to support us and work out of the house but it has not worked out that way so far.

                        On the bad days I wish I would have found him a better family but I never wish that I didn't have him at all.

                        I am selfish and I kept him and he keeps me wanting to be here for as long as possible so I give him my best.

                        In hindsight though I would have never gotten pregnant; I got so much worse after not necessarily bc of the pregnancy it may just be the MS.

                        I am a very resourceful person but running after a toddler when you can barely walk is scary bc they run for the street and all sorts of other things.

                        I love my life but I just had to say how I feel bc I didn't listen to other mom who were healthy physically when they told me how hard it is.

                        Either way if you do adopt/have a child you sound like you will be amazing just borrow one for an entire week if you can ;-) bc you will never sleep again!

                        Comment


                          #13
                          babies everywhere

                          All of my friends are either hell-bent on having babies or recently have. So I will always have a ton of small children (and eventually, not so small) to hang with. I just always considered adopting a child to be something I would do, and this **** (MS dx) has thrown me for a loop.

                          I guess it is a good sign that so far, the thing that upsets me most is the likelihood that I'll have to find other ways to do something good in the world.

                          Comment


                            #14
                            There is always volunteering at a local shelter if you are not in a situation to permanently adopt a dog or cat. I am ALL about rescues (all of my animals were rescues).

                            Do what you can now while still totally able-bodied!

                            Comment


                              #15
                              I work with difficult populations, and before I was dxed but having symptoms I noticed that my compassion, patience, and interest was flagging with them significantly. I thought maybe my sarcasm and cynicism was getting the best of me, or I was burning out. I also noticed a teacher in the education forum on here saying she was "snappish" with the kids and it was not fair to them.

                              MS was thought to be a white matter disease, but they now know that it gnaws on your gray matter as well. There were a few things I realized I probably would have to take off my table. Is it fair, heck no, a little better than the brain tumor they mistook one of the lesions for but not much. Another thing is that stress contributes to flare ups. Older kids in foster care would put the best, most patient, neurotypical person through their paces. Here in Philadelphia there's a big brother/sister type program that is a bit more involved and requires a large dedication of time. You could also fund a scholarship at a community college--I know the MS society also has a scholarship fund for those affected as well as having a family member affected.

                              I was trying to get pregnant when this happened, so I kind of had to deal with it since there were frozen tubes of man stuff and the upper ceiling of my fertility to deal with. But, if I were younger I would have focused on myself for a year or two at least, just to see how active my disease is and fully come to terms with it. I know you feel the time of mourning is over, and I'm glad you're taking an optimistic approach. I guess what I'm trying to say is there's no reason to rush a decision. The fact you asked is why I volunteered my experience because it is something to self-evaluate with before you take the plunge. Good luck.

                              Comment

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