One step at a time

[RoyceNewton]

One step at a time is what it takes. Slow yourself down, this situation, our illness will not be solved in a day. Actually “YOU” may even find it a little worse in the long term if “YOU” find yourself rushing forward like a bull in a china shop trying to find all the answers in one day.

I will make life easier on “YOU” by giving “YOU” a few answers just to set your mind at ease right now. This is chronic, incurable condition and there is no good reason as to why “YOU: have it. I am not any type of medical professional. Ex pilot actually. I do not know your exact answers. I have had a little experience with this condition. Combined total of forty plus years, with male (Mine) and female (She who must be obeyed) experiences with our situation. So a little but I am far from an expert.

Okay most importantly, this is a very DOABLE condition. It is not any kind of end, so put that from your mind. A lot of the mistakes “YOU” are about to make can be reversed, trust me, “YOU” like me will make mistakes, a lot of them. Because “YOU” eventually will get your act together Goes not mean that “YOU” will not make mistakes in the future, try not to make them to big, at least ones that “YOU” can get out of are always good. So learn to start forgiving yourself and keep forgiving yourself and maybe others. They might be as scared lost and confused as “YOU” are.

Okay get your head straight. Cry if “YOU” need to. Actually just cry, this happens now and then. It does, just learn to be cool with it. Find a Disease Modifying Therapy (DMT) to take. One that “YOU” will take per instructions with no exceptions. I have taken 4 different ones in my Relapsing Remitting ms (RRms) career so changing is really not a big deal. STOPPING IS, NEVER EVER STOP taking one. As I said I am not a doctor but I do suggest taking the strongest medicine that “YOU” can, I believe today it is called Ocrevus, Why start at the oldest and weakest, start at the strongest and work down if “YOU” have to. When you pass on it is okay then to stop, but before then, naughty naughty, Changing Neurologists (Neuros) is okay as well, I have had four in twenty years. Admittedly I have changed countries three times and addresses four or five times, but not everybody does that.

So one step at a time. Calm down, find a medicine and take it. Wear protective underwear, I am big on protective underwear, I have needed it more than once and have been glad I was wearing it, She who must be obeyed did not wear them early on and now has difficulty going through public doorways alone. Psychological I am sure.

So that should be enough for “YOU” at first. Calm down, crying is okay, we all do it. If “YOU” do nothing but cry for your first month that is okay, better out than bottled up inside. I will say this, some people might leave “YOU”, now when “YOU” need them most. Not everybody can handle their own fear and apprehension. “YOU” can and “YOU” will. This is your journey to walk, your path to learn from and grow stronger living with. “YOU” are going to live a long time with your ms. Make every effort to make your time as full as “YOU” can and never surrender to RRms. Remember it is a DOABLE condition and “YOU” have within “YOU” the strength to DO it. Just let yourself find it, then nurture it.

Royce

20 years and counting

[carolek572 CommunityAmbassador]

Twenty years, many steps have been taken in your ‘ms’ journey. For me, 13 years, one address, one neurologist, 3 DMTs, since diagnosis! But I know that things can change in an instant!

[RoyceNewton in reply to carolek572]

half the fun of life

[carolek572 CommunityAmbassador in reply to RoyceNewton]

It is not a lot, but it is a life! I'll take it!

[Bodega1939]

Thank you, RoyceNewton. You have said it as I have lived with RRMS...I loved the days, weeks and month I was not bothered particularly by symptoms. For years I refused DMTs due to warnings I read about side effects. and even death (we don't hear about that part too much, do we?).

Exactly as you have suggested, every time a new symptom showed up, I just did what I could to go around it. Then I started having collapses after I began working at the UNM--about 2005. I was almost 66 and that collapse along with the fatigue and coordination issues I had coped with since I was 27, made going forward difficult and had no real medical assistance though I did ask and that was mostly due to my age. I heard over and over "Old people don'g get MS" as if my history as I lived my life was irrelevant. Also while I have a PhD in immunopathology and a DVM and a MSN and was a Family Nurse Practiitoner, I was treated without exception like a woman with not capacity to think. (I am so NOT impressed with SO many MDs. )

I think too many Neuros do not know how many people cope with MS and I think there is much more MS out in our population that is even suspected. And I do not think I was different than most. No one has ever really looked at what really rural populations have as far as diseases, I think.

Now that I have secondary progressive MS, I am not so sanguine. I can walk due to Ampyra (thank god and my Neurologist) but the fatigue, weakness, lack of energy and coordination issues are not controlled. I have read much about the future of secondary progressive MS and I am not thrilled. As a now juried artist and a sort of musician, when am I going to have to stop that fun?

This week I will see a shrink. [An idle aside, why is a psychiatrist or PhD psychologist called a "shrink" anyway?] If I can change my mind set with hers or his knowledge and training I will be thrilled.

Nemaste to all of you who read this and possibly respond. Your remarks are highly valued. Hugs, Bodega.

[RoyceNewton in reply to Bodega1939]

I had never thought of why they are called shrinks, it does make you wonder. Glad everything seems to be going as well as can be expected. and you are Doing well

[carolek572 CommunityAmbassador in reply to Bodega1939]

They are called shrinks because the definitely shrink your bank account and they supposedly shrink your problems.

[Bodega1939 in reply to carolek572]

Yes, well, and fortunately I do go to the VA. So, I saw a very, very young woman doing a Fellowship in Behavioral Health for my depression. In my opinion depression is a given with MS but how it is expressed can be as variable as we all are. And, disturbingly, it fluctuates. Some days we are fine and others, not so much.

It may be as difficult for her as it is for me because I have at a minimum of 5 decades more experience than she and mine is mostly in medicine of one kind or another and includes 10 years of Hospice, HIV/AIDS work, and always a lot of Geriatrics. She did ask me to answer questions in a program called "ACT". I presume I am to find a goal, develop a strategy to achieve that goal and do it. She will, of course, guide me. Now there is nothing wrong with that expectation. But, I do think "shared decision making" should be how all our 'doctor/patient' interactions should be. There was none of that. My main concern was not addressed and I have about 9 others. Oh, well.

Then "whoever is in charge" set me up to see another woman today...I had traveled 400 miles for two other appointments this week and I did not have the energy for another 200 mile round trip. I called and canceled.

The Fellow has her emphasis in geriatrics.... It is going to be hard for all concerned, I think. And it will be interesting, I am sure.

[RoyceNewton in reply to Bodega1939]

jet as long as it is interesting and keeps you amused, I do not think even peoples best of intentions solves every problem. To be honest I am not quite sure what depression is exactly. I understand sadness and melancholy bit depression no, not really. Apart from the chemical issues causing it, whoever would you be depressed with ms? I just do not understand

[RoyceNewton in reply to carolek572]

love it

[Bodega1939 in reply to RoyceNewton]

RoyceNewton, I think your observation is valid. As I understand it, sadness is of shorter duration and often less intense than melancholy or depression. Sadness periods are of relatively short duration, usually less than 6 weeks or intermittent throughout a period of time (until acceptance of what made you sad is accepted) whereas depression=melancholy is very intense and lasts longer; and,for some, it is lifelong.

The depression I have is manageable at this time. It may not be in the future. It does involve a devolving physical state for which there is no solution, absence of my kids who I adore though they, too, are getting older, 57, 59 and 60. and they have jobs or have retired and have little expendable money. They will be developing the problems of being elderly and I won't be able to help them. I know there is no solution except acceptance. What is, is. They understand the basics of that philosophical system. It is the living of it daily that is often fraught with angst!!

[RoyceNewton in reply to Bodega1939]

thank you, I understand better, I believe I just did not fully understand the terms, thank you. I believe that involves acceptance of what is and what it should be. Thank you, you have given me something to think about.

[RoyceNewton in reply to Bodega1939]

I am honestly trying to belittle you or anyone, just to understand. If you would rather I just shut up, tell me so I will not be upset

[Bodega1939 in reply to RoyceNewton]

Please, do not "shut up", RoyceNewton. Your opinions are valued as is your life and what you have experienced, how you view those experiences and what you are experiencing now and your thoughts about them now. I am only me and my experiences and and those same experiences are absolutely not every persons.

I was hoping this HealthUnlocked would have more people willing to have open discourse...I do enjoy a mix of serious thoughts, and hilarious outcomes, intentional or hot and in any mix. And I am enjoying HealthUnlocked. My snifty (snazzy and smart, er, nifty) Neuurologist has read or is reading HealthUnlocked which did surprise me.

Your comments are valued.

[RoyceNewton in reply to Bodega1939]

thank you very much

[JTZES in reply to RoyceNewton]

This blog has helped me more than the phsyciotrist ever did.

Everyone on here understands what MS is and don't give you the Happy bull****. That they think will help you. If they don't know or understand your condition then they are useless.

I contribute when I have something beneficial to say but a lot of the post help with depression.

It's a great group and it would be nice for everyone to post. Not just when they are having problems or fears.

We will help everybody though.

[RoyceNewton in reply to JTZES]

as they say Word sits, said with a big grin on my face