I met my cousin for the first time in my life in a very sad situation but it was a good thing for us (My sister Karen on the left, my cousin Kerry in the middle and I am on the right)
We met at her dad’s funeral. Her dad was my mom’s brother and he had passed away, last summer. My sister, my mom’s cousin John and my mom’s brother – my Uncle John went to Wisconsin to pay our respects.
My mom’s sister, my Aunt Cathy was there and there was another person who I thought was my Aunt Cathy (lady on the left) – and it was not – she was my Uncle Leonard’s daughter Kerry (lady on the right). I was astonished at the resemblance of the Roach family clan – she really has that Roach smile.
We never really talked much but when she went back home, she told me she has MS. I was shocked – what are the chances of finding out someone in your family has MS. Most doctor’s will not say it is hereditary but my hunches and beliefs that MS can be genetic are dead-on. Why? On my mom’s side – her oldest sister – my Aunt Mary’s son has MS, my mom’s side – her brother my Uncle Leonard’s daughter has MS, and I have MS. On my father’s side – his two sisters my aunts have MS. Kind of ironic don’t you think?
I have been corresponding with Kerry off and on for over a year. I received a reply from her this morning – so thrilled to hear from her. This is the email. There are some things that I can relate to her situation. Hope that this can help someone. If it does please post your comments in this blog.
My first email to her:
Hi Kerry, I saw your name in an email posting from Wanda and thought I would drop you a line. How is everything going with you? I am ok – dealing with pain that is related to my MS and Diabetes. I have medication that I take so hopefully the pain will subside soon. Drop a line when you can – am always wondering how you are. Hugs,Pam
Kerry’s response to my email this morning:
|
Pam,
I have been ok I guess. I am so sorry to hear that you have a lot of pain. Do you still take any injections? I know that doesn’t stop the pain but maybe help a little?
I had a really bad episode that started last friday and got worse. I woke up feeling like I was drunk, not so because I don’t drink,but couldn’t stop my head from being dizzy causing me to fumble around with no control. I went in for the steroid infusions, yuck! then got lethargic and they made me stay in the hospital. No one know quite how to deal with this disease. I just went to another specialist and he seems not too worried about it, but woke up again like that this morning. How do you deal with this? I need to get back to work and get normal again. I haven’t had anything like this happen before and WOW is all I can say…If you ever want to call me sometime you can so we can speak…I enjoy your page you put up on M.S. I sure dont know how you have handled this for so long….I have bunches of questions that everyone seems to not have a direct answer for…so frustrating…..
Anyway…I hope you have a wonderful day and thank you for emailing me…keep in touch
Kerry
My reply to Kerry today:
Hi Kerry:
I am sorry that you have been going through so much. Yes I understand what you are talking about. The drunkenness feeling I found comes from being overworked and not getting enough rest. I always take it as a sign that my body is telling me I need to rest and sleep. I have to tell myself that the house will stay dirty, my sister can fend for herself and I need to sleep. It usually takes me about 2 days to recoup from what I have done and normally by then I am better.
Another thing I found with me I don’t know if it means anything – I try to incorporate more foods that have Vitamin D in them – like Shrimp and fish. I feel better in a few days when I have had a couple of shrimp dinners like – sautéed shrimp in lemon garlic olive oil parsley and put over a small serving of pasta. I do not do fried it messes my system up really bad. I keep a food diary of everything I eat and write down the results at the end of the day — this helps me know how I feel the next day to understand not to eat some of the foods for a while until I get back on track. After a few months you will begin to see a pattern.
Here is a link that has a list of all the foods with high Vitamin D levels — you might want to experiment with that. http://nutritiondata.self.com/foods-000102000000000000000.html
Doctors do not always have the answers I have learned and can be extremely frustrating. I never always take their word as face value because half of the time I think it is guess-work and based on information they have received from MS studies. Everyone goes through different things and the end results are different for many people.
The steroid fusions I did this one time and caused my sugar levels to elevate to the point I had to go to the emergency room to get treatment to lower my blood sugars. The infusions I will never do again. They are a mind trip I think and cause me to feel things that are not who I am.
I do not do the injections – the recent neurologist I went to see is dead set against this (my decision not to do the injections)- she said that I will pay for this later. I am not so sure. I think everything that we have for MS is really just to slow the progression down, I don’t see it as a cure yet. I will be checking out the University of Michigan’s department because they are my last resort as a neurologists. Hopefully I will find someone I am comfortable with.
I am on Neurotin for the pain 600 mg’s a day. I take (2) 100 mg’s morning noon and night – seems to allow me to sleep better – sleep is the key — if I do not get sleep I cannot function very well the next day. I have to rest. I can feel my body changing feelings and moods when I do not sleep at least 8 hours a night or more if I can.
Is it ok if I post your email to me on the blog without the email addresses and phone numbers of course, about what I said to you?- I think that someone else can learn from this too.
I will try to call you — it is hard for me to hear on the phone sometimes – depends on the person and how clear they talk. I find sometimes I communicate best by text messages and emails. I can call you through a videophone relay service but you will be talking with an interpreter and then what you say is signed to me and I sign back to the interpreter so that she can relay what I am saying to you.
PLEASE email me your questions, we can work through this together. You do not have to be alone in this. Have you thought about going to a support group meeting – they are wonderful I have been to a few of them – keeps me sane.
Be well,
Much Hugs
Pam
|
MS and My Life 