There can be so much confusion, frustration and sadness when you are first diagnosed will any illness. The doctor’s want to talk about medications “they” think you should take and sometimes they want to rush you to make the decision that affects your body. I think it is obviously important to listen to what they have to say; after all they are the “experts” so they should know what is best for medicine, right? But they maybe the expert with medications and illness but you are always going to be the expert in your own body!
I can remember when I was first diagnosed with Multiple Sclerosis my doctor wanted me to start something immediately. He had it in his own mind what was going to work best for me. Considering I was young and in complete shock I did not question him too much and just went along with his suggestion. Of course 17 years ago there were not as many disease modifying medications as there are today, so my choices would have been limited anyways. The disease modifying medication he suggested did not work for long because I was not capable of doing my own shots, but we live and learn through events like this!
My best suggestion for anyone that has been diagnosed with any illness is, do as much research as you possibly can! Research the illness you have been diagnosed with, so you have a better understanding of what you are dealing with. Then research the medications available for your specific illness. The decision on medications is very important because it can slow the progression down of your illness. You need to feel comfortable with you decision because you are the one in control of your health!
Dealing with any illness is very difficult so it is extremely important to have a very strong support system! There might be times you need to vent out your frustrations! It can be vital to have at least one person that will be understanding, encouraging and listen patiently! During times when your illness causes you to feel worse than normal having someone there to help with daily tasks is fantastic. Of course I am not one that is good at asking for help, but if my pain issues get bad enough I will eventually ask for some minor help.
Acceptance is probably one of the hardest things. But, once you know what you are battling, have done your own research and made an initial plan for how you want to manage your health, you are off to a good start! As time passes your plans may change and that is okay. You have to learn to be flexible because life is always changing! I have also found it very helpful to find a hobby that is almost an escape from whatever you have been exposed to. It is mentally helpful to have something that helps you relax and hide away from reality in short-term!
I hope y’all have had a nice weekend! Are you ready for another Monday and start to a new week? I can honestly say that I am never ready for Monday because it is just a rude awakening to another long work week! On a positive note at least we are still here living our lives! I have been working 6 hours days so I may try to increase my hours for this week but we will see how the days go!
Thank you for visiting my site today and making comments! I always love to read what you have to say. Y’all have the ability to open my eyes to new views which is so amazing!! I hope you have a great and relaxing evening! Much love to y’all!
Always, Alyssa
Reblogged this on Survivors Blog Here.
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I think we were both diagnosed around the same time… 99 for me…the three options I had for medication were the ABC drugs Avonex, Betaseron, and Copaxone. At first I thought Avonex, it was only one day a week, until I saw the SIZE of that needle and new there was no way in hell I could do that myself. Betaseron and Copaxone needles were the same but betaseron was every other night instead of every day…decision made….that was it. Probably not very smart of me, but that’s how I did it. I was on Betaseron for 10 years with horrible flu like symptoms and welts everywhere from the injections. but that is MY story….I agree…definitely DO YOUR RESEARCH and do what works for you!!! great post hun!
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Yes, we were diagnosed around the same time! My doctor went straight for Rebif, a Betaseron. When that did not work out he mentioned Avonex but then showed me the needle and I told him he was insane!! I ended up being on Rebif for a few years but was not doing the injections when I was supposed to. I also did Copaxone and was really horrible with that one as well! I hated the injection medications! I had flu like symptoms with both Rebif and Copaxone.
WOW, you were on Betaseron for 10 years? That is amazing!! I could not even do the injections myself for a year without missing doses. You are fantastic!!!
The welts were hell!! Doing research is a great thing!!! I hope more people do their own research instead of only listening to what the doctor says!
Thank you for your kind words! I am glad you enjoyed this post!!!
I hope you are doing well Sweetie!!!
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I’m sorry let me rephrase… I was on the drug for 10 years…but yes at least 1x per week, I would miss, because I just couldn’t do it anymore
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I hated doing the shots! They were never the fun shots so I skipped them a lot! My doctor was not very happy with me but he got over it!! Looks like we are a lot alike!!
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Loved your blog! Hopefully sometime we can share blogs with each other!
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Thank you! I would love to be able to share blogs with each other!
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I’m so new I only have my mom as a follower….but I’d still enjoy the exchange any tine! I don’t have the same illness/issues as you but I can still relate. It’s tough, especially when people don’t understand the issues aren’t JUST physical. They also affect you emotionally and so mentally at times I feel like my brain is just done. Quitting time. Shuts down. No one gets how taxing pain can be mentally.
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I understand! It is always nice to be able to just chat with someone that understands, even if it is a different illness! I am pretty sure I am following you already, so you have 2 followers!!!
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My son has MS, has had it for nearly 2 years now, and he is now giving himself shots and it pains me to watch him because I know it hurts every single time. Your advice is spot on and very wise. A solid support system is vital.
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I am so sorry that your son has to do shots. I know it is not fun. Has his doctor ever considered the oral forms? He is lucky to have a wonderful mother!!!
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Well, he started on an oral form and it lasted about a year and then he relapsed. That was when his doctor and he decided to try a shot.
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I hope the shots work better than the oral form. Relapses are a crazy thing and can happen any time without any warning. It is definitely frustrating. I wish you and your son comfort and healing!!
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Thank you, Alyssa! Sometimes I feel so helpless, watching him go through this. I wish you all the best as well.
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It is a very frustrating illness but he will be okay! How old is he? It is important to stay on top of these doctors. Sometimes their suggestions are not the best answers! There are numerous MS medications out that are not injections if your son really hates them.
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He is nearly 25. He does have a positive attitude which I know helps all of us in our trials. He is a good boy (he will always be my baby boy!). I will certainly pass on your advice. 🙂
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I know as his mother this is hard for you to watch but it won’t all be bad. I have had MS for 17 years and I have had bad times but there are good times as well. It is scary when you see some others with MS that might be more progressive but considering he is taking medicine it can be under control! I am glad he has a positive attitude!!!! He needs you but you need to be able to talk about it as well considering you want to make everything better for your son. You are a great mother!!!
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Thank you so much, Alyssa, for your kind words and your example! You are amazing! I admire your strength and outlook.
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Thank you so much! I do truly believe that positivity can be life altering for the best!!!
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You’re amazing. I was so scared to read someone else’s ms story but we’re all the same and learn the same life lessons- like life IS always changing. Your blog is amazing thank you!!! Xxxxx
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Thank you so much for your incredible kind words! I am glad that my blog is helpful to you!! I have found it a little helpful to chat with someone else that deals with MS. I am not going to lie, it can be hard depending on what their severity it. I hope you continuing enjoying what I post and please let me know if I can ever do anything for you!!!
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Finding the right drug is annoying. I didn’t start any until a year after my diagnosis. Started with Copaxone I hated it and I’m on gilenya now which is a tablet once a day. It’s better but side effects can be really bad, luckily so far so good. X x
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I had so many welts when I did Copaxone and Rebif. Gilenya is great because I don’t have to do anything but take a pill each day. I have not had any side effects from Gilenya or at least that I have really noticed! But who knows!?
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Oh you are on gilenya too, us twinning again 😂😂it’s been ok to me so far so not complaining X X
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I was on it for 6 years then made the crazy decision to take a break and try something else. It ended up being a mistake but now I am back on track with Gilenya! We are so much alike it is crazy!!!
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I needed to read this… perfect timing! Thank you! I hope you’re well, Alyssa!
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I am so glad this was helpful to you! I hope you are doing well and I am always here if you need anything!!!
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I agree 100%. And there is so much more research for all illnesses today than there was 20 years ago. And so many better options. I strongly urge you to find an outlet; support group to get involved with. (On-line is fine, time is so limited as is our energy.) It can be very difficult to share ‘everything’ with friends and family. “Chronic” is something we have been diagnosed with, they have not… it ‘gets old’ for us, imagine what it feels like for them. I have just found separating my illness from family time to be a must as it has backfired one too many times when I have needed to vent OR EVEN just talk about accomplishments.~kim
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Thank you Kim!! I actually have a few support groups that I am part of, they are all online but it is nice. I am also working with another girl on a Facebook support group for MS. It should be live soon, if it isn’t already. My hobbies getting away from my illness are reading! I absolutely love Nicholas Sparks and James Patterson, two extremely different writers!!
To be honest, I try to limit my talk with family about my illness because I don’t want them to have to hear the same thing over and over again. I always read my posts to my husband before I publish them and I wonder if he gets tired of hearing my writing! They are not all about MS and illness so hopefully he doesn’t get too sick of it!!! I always appreciate all of your kindness, you are a truly amazing person Kim!!!
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Thank you so much! I appreciate your kind words! I love your plan and I am a Patterson freak! Isabel Allende is my ‘opposite fav.’ My husband reads my posts because I MAKE him! It’s part of the deal of being my hubs! HAha… Good to hear of your groups! ~Kim
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Did you read Patterson’s series The Women’s Murder Club? That is what got me hooked to him!!! Our husband’s always know the deal and they do their parts!!! My husband doesn’t really like reading so I read it to him!!!
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I am an Alex Cross fan. I read a few of the Women’s Murder Club but Alex had my heart. 😉
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I have read a few of the Alex Cross but have several more to read. Maybe I will make one of them my next book to read!!!
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I agree. Forums, known and unknown things, meds, side effects, everything….The more you know, the better.
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Absolutely! I learned to not just rely on doctor’s opinions!!!
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Never. Most of good advice I got from people who were in the same boat. Practice instead of theory.
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I could not agree more! Doctors get too caught up with the newest medication, not necessarily what is best for the patient.
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Yes. I remember when a doctor suggested another experimental drug, though I had pretty severe side effects after the first one. So, when I asked him – what if it happens again? How can we be sure it won’t? He just shook his head-we can’t, he said. So I left. No regrets.
We’re a bunch of guinea pigs to them.
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Very true!!! I sometimes think new meds are like toys to them and maybe they get some kind of kick back from the drug companies. But I could be very wrong about all that!! Questioning doctors is frustrating for them but they get paid the big bucks so they can deal with it. We need to care more about our health than they do!!
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Exactly. I think after all this time, YOU know what’s best for you, nobody else.
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Absolutely 100% true!!! I do not care how many years a doctor went to school, we know what is best for our body!!!!
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Pingback: Mystery Blogger Award Nomination #2! – Life with an Illness
Thank you so much Mackenzie! I will be providing my answers and nominees very soon! I am feel very honored that I have been nominated for this fabulous award!!!!!!
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you can not know how much this speaks to me! Thank you
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I am so happy to hear that!! And you are very welcome!
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Your words, quotes and uplifting attitude are highly inspirational! Sending you Love and Strength (that of course you already have!)
Blessings,
Sandy
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Thank you so much Sandy! I definitely try to hold onto a positive attitude. Life gets so difficult and demanding so I believe a positive attitude helps! I appreciate your kind and wonderful words!! Sending you love and comfort always!!
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