Last reply 2 weeks ago
SPMS/My short of the story

I live in the Northwoods near Lake Superior. My many friends included wild (tame) deer, fox, rabbits, porcupines, skunks, wolves, coyotes, wild turkeys, pileated woodpeckers (etc), bobcats, hawks, eagles, and many other creatures. After 22 yrs. I had to move out of the forest to the city (albeit small) as I could not survive the new neighbors who deemed cutting down and killing the beauty that gave me joy. I was never threatened by the fishers, cougars, moose or the black bears, but the humans became a horror to behold.
I am housebound now any way. I am closer to my neurologist who I only see twice a year as this disease progresses.
My parents passed away 3 months apart 3 1/2 yrs ago from cancer. My same birth year twin brother passed when he was 18 and I was 17 1/2. Watched him die on the side of road on a crash on my motorbike. My best friend of over 20 yrs. passed last yr. It’s been a long road and I am still here. 60 yrs (almost 61) and I have come full circle.
Life is going through the valleys and coming out the other side. I don’t climb mountains. I look at them in wonder.

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Anonymous
2 weeks ago

@lily Hi I also have SPMS and live near Lake Superior. I will go out on a limb and divulge that I am a Yooper born and raised. I dont have any questions for you I kind of just wanted to say Hello
I am married and have no kids. I am housebound now as optic neuritis gave me permanent eye damage and I can no longer drive. I have a puppy and 2 huge fish to keep me company while my husband is at work Feel free to message me if you’d like to chat I have my phone near me all the time. Take care!


lilyc
2 weeks ago

@wheelpix Hi Back. Was always going to Ontonagon , but never been to Houghton. Had relatives who lived in Marquette. I lost the sight in my right eye for a time yrs ago. Optic Neuritis. I don’t drive unless I absolutely have to. PVD both eyes now.
Is your Puppy Big or small? I have 2 kitties. Both rescue. 1 is Maine Coon who actually alerted on my seizures. Are your huge fish black goldfish or coy? I have worked with animals my whole life. Used to work in the largest pet shop in U.S. Of course we didn’t sell cats or dogs (nothing like that from Mills). We had fresh & salt water plus huge Coy pond along with birds, reptile room etc. I also worked in zoos and at Vet offices.
I miss the wildlife. I have more photos of trees, birds and wildlife then I do of family! I have video also. Thought about contacting Nat Geo or some thing. 🙂
Will be going up to Lake Superior in Spring. Live in Northern Wi. May God Bless you.


itsmewithms
2 weeks ago

@lilyc @wheelxip hello from your neighborland Wisconsin 😉 we escaped the city by going east instead of north but come up that way sometimes. My neuro told me this spring that I could now be considered SPMS and suggested that I switch from Rebif to Ocrevus. I just completed the second round of the first dose last week. I am glad that now there are DMTs approved in the US for progressive forms of MS.

I can still walk ok but if heading out on uneven terrain (ie not smooth pavement) or for too long of a distance (more than across the parking lot) I carry a walking stick from Cabellas. I have foot drop in my right foot so it is just safer that way. After I face planted due to deep grout I realized it was better to carry the stick than have to pry myself off the ground 😉

I noticed a worsening of symptoms through June into July so my Neuro ordered an MRI that did not show activity so he would not advise steroids so I just soldiered on. At the same time my boss decided I was no longer needed in her Dept at 3M (I am a business systems analyst with an accounting background) so I was pushed out of there and am still looking for a new job. Kind of hard in your 50s and having a limp and carrying a walking stick. I did have a hip replacement (likely my gait issues with MS contributed to needing it) and explain my gait as related to that as I think that would be more acceptable than saying I have MS.

Anyway- also started having blotchy vision in my left eye so my Neuro sent me in for another MRI this Monday. Now he sees activity that justifies steroids so working through how to get Fairview “home infusion” to place the line to get me started. They suggested that I drive to them in DT Minneapolis to place the IV line…so much for the “home” part ;-0 I said I didn’t think that was a safe recommendation for someone diagnosed with Optic Neuritis and asked them if they wanted to accept the liability for that recommendation…give me a gram of steroids and bad vision and send me back out on the road. So I have to wait until Monday for a nurse to have time to do it more locally next Monday. Don’t like the idea of waiting any longer (the kit with all the drugs was delivered to my home quickly…actually at 9:15 PM when we were settled in bed trying to go to sleep) but now it sits until the IV line can be placed. Hopefully my MS related symptoms are resolved quickly as they have in the past when I’m given the steroids for a few days.

I thought I’d introduce myself as a local 😉 , living the rural lifestyle and a fellow MS’r that is now classed as progressive and just starting with Ocrevus.


Anonymous
2 weeks ago

@lily Hi great to meet a fellow North country MSer! It sounds like you have had quite an exciting life. I love animals but I worked as a chef for over 20 years
Mu walking and balance became too unstable to continue working around fire and sharp things. My puppy is a dachshund mix. He is quite the little firecracker. I have a koi and a fancy goldfish in a very large aquarium as i dont have a pond sadly. I am sorry to hear about your vision problems. I have w0/60 vision in one eye and 20/400 in the other. I live about 5 miles south of Houghton we live in big snow country here. Do you get a lot of snow or mostly just cold? I have relatives who live in Green Bay and Fon Du Lac. Thanks so much for writing back, nice meeting you!


Anonymous
2 weeks ago

@itsmewithms Hi it’s nice to meet you fellow North country MSer. I live on Michigan’s Keweenaw peninsula just south of Houghton. Gosh it sounds like you have been through the ringer lately
I am sure glad we have a place to talk about what’s going on with people who have been or are there. This past summer I was hospitalized for an exacerbation and had 16 rounds of IV steroids followed by intensive PT. My neuro and I have discussed DMT options and he said that as long as I can tolerate the steroids well that that would be my best and cheapest option along with symptom meds. Just an example i have Medicare as my insurance and they paid for me to have home health for a month from Aspirus At Home which was wonderful and a real help. I truly hope you get some help close to home. It’s so frustrating sometimes dealing with doctors and insurance. Wishing you all my best and have my fi gets crossed for you!


lilyc
2 weeks ago

@itsmewithms @wheelxip I cannot stay on this site. I thought I just wanted to meet a few peops but this is going to drain me. I have steroids. I have lots of drugs they have tried over the years. Yes, we get lots of snow. I used to live in the woods of Minocqua, Wi. Moved a whole 40 mins south to Rhinelander. I was born here 60 yrs ago in the woods. It is now city living to me. When I was younger I traveled and lived in many States.
Was married in Hurley, Ironwood. My husbands family. We ran a Restaurant in Minocqua. My hubby’s fam came from Sicily and opened Bela Vista “Mama’s in Minocqua many long yrs ago. It was handed down the generations and now sold out of family after all these long yrs.
I worked in the restaurant business with my husband for many yrs. until I couldn’t walk any more.
As far as horses. Grew up with them on a farm. Rode when I was younger. This website has no measure for me to meet with all I have been through in my life and all I have tried with M.S. I could only bring people with any type of hope down. I can tell you that SPMS doesn’t always show new disease activity. I can tell you steroids are harmful and short-lived. I could tell you steroids are counter-intuitive keeping you awake when you need sleep. I could tell you I some times want to go to Hospital but don’t. The pain I suffer now makes me wish I would just die but of all my family I am still here. God has a purpose for me. I believe in Jesus as my Savior & Lord.
I am so sorry I joined. Forgive me. I didn’t know what I was getting in to.


Anonymous
2 weeks ago

@lily oh no I am so so sorry if I pushed you! I truly did not mean to upset you. I implore you to please stay and maybe just read. I am deeply sorry to have caused you to be uncomfortable! No need to reply to this message I just wanted to apologize


itsmewithms
2 weeks ago

@lilyc the site can be a bit overwhelming. Apparently it has been here for 10 years! It sounds like other sites have been up and down over the years and there were a lot of rules about what you could say and share, especially about DMT support or criticism. I like that everyone can be pretty honest here and people are so supportive. It is hard to find a community that understands us so while some of the posts can be real downers I take the good with the bad. I have seen people shut down when they look at the site as a way to launch some personal business or product, so that is good. We have enough groups trying to make money on us.

I’d encourage you to take a break if you need it but check back in if you can. I sense that others do that as well.

I finally got a confirm back about starting a round of IV steroids and they can’t work me into the schedule until Monday. I was hoping earlier than that but that is apparently what they put in the paperwork so even though the guy was willing to fit me in today or even over the weekend he can’t because of the way they filled out the paperwork. Ughhh…

Another case of the person on the other end of the phone not really getting it. I even pushed her a bit when she said that “Monday should be fine, then, huh” and I responded back that if she only had partial vision in one eye and an unsteady gait would she rather have if fixed ASAP or would she be willing to wait…if it was her mother, her spouse, her kid…would she want them to wait? what if it was her… it seems that only we understand us sometimes 😉 that is why I check in and go through the posts here, I respond to the ones that I can relate to or help with and learn what I can. Sometimes only an MS’r will understand.

Hopefully we continue to see you around 😉 if nothing else you can message the friends on the site. Nice to see other locals here…much of the traffic is people in the British Isles. It is interesting to understand what issues they have over there in their NHS and how they treat MS in different areas of the world but also nice to meet neighbors 😉 Take care


lilyc
2 weeks ago

@itsmewithms @anonymous @wheelxip (anonymous & wheelxip same…sorry to have lost you)
I want to re-friend you wheelxip. (don’t know how?) I think I am able to communicate with just the two of you fellow northern ms’ers. I was overwhelmed like you said itsmewithms. Thank you for reaching back to me.

I absolutely want to assure wheelxip she did NOTHING wrong. It’s just that I have been so isolated for so long now (yes, excuses) and don’t know how to talk on a website. I am not on f.b. or any social media.

J.K Rowling is in Scotland & her Mom passed from M.S. She is an awesome example of British Isles, England etc…. by giving away her millions to create M.S. home and research foundation. Also giving money to help orphans.

I receive a lot of M.S. info from “over there” as they seem to be better at taking care of their M.S. ‘ers then the U.S.

Any way, I want to thank both of you for reaching out to me even if I am “lost” at times. In 2012 I had an MRI the Neurologist said she was “surprised I was still walking and talking.” I have those on CD. Looking at them makes a person cry. I don’t have MRI’s any more as I can’t lay on my back in the machines. No need to see my brain and spine any way as it is disturbing, yet I am still talking (although I slur my speech some days, and I can walk in my own home by grabbing walls, counters etc…) I do fall down with no warning. I have many other M.S. symptoms but I will spare you the details. So, in a way I am a miracle for the last 7-8 yrs.

Please accept my apologies anonymous-aka:wheelxip & refriend me?
Ditto to itsmewithms.
My real name is Lori by the way. Lily was a nickname given to me by my hubby’s little bro.
I like it.

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