I am dealing with maybe MS? Had to stop Remicade. Waiting for Stelara. I have my usual amount of pain in all my joints plus. Also, have sporatic left sided numbness combined with weird inappropriate pain in spots. My right hand is numb and cold and stiff and painful. MRI has shown a new lesion since July. What the heck am I going to do? I am 40 with 2 small kids. It is my dominate hand, I have problems wiping myself, dressing, working and doing the card making that I love and is my stress relief. Help!!!
I have been trying to stay positive as I know negative will not help but I feel like my ability to do so is strapped and I will snap sometime.
Any words of wisdom welcome. I live in a remote area and do not have the finances to go to somewhere at this time due to still trying to recover from being off work due to thyroid tumours, surgery to remove them and cancer.
Kirsten, I’m sorry you feel so low at this point, you certainly have alot on your plate.
I don’t think I can give you much in the way of words of wisdom, but have always found one thing that brings me peace, when I’m feeling really low, is to go into nature. I visit some horses I know who are always pleased to see me (or maybe the carrots I carry!) If I can get to my local park or beauty spot and sit and listen to the bird song and watch the squirrels. Or just sit quietly in my back garden and smell the new morning. Anything that takes my fancy just to give myself a lift.
These little “joys” of mine don’t help my situation, they don’t make life less painful, they don’t solve problems, but they help me cope, to mentally re group,to soothe my sole.
I hope you feel better soon, thinking of you x
Thanks for that Louise. Prob does not help that it is the tail end of winter we have dirty snow prob for another 3-4 weeks and then the season of dust begins. Also, discovered I react to snow mold so tis the season of that as well. But am keeping my eye open for little natural wonders. Did see ptarmigan the other day.
Kirsten - sorry you're dealing with so many things physically and emotionally. Dealing with the various things our illnesses can throw at us can be incredibly challenging, especially when it interferes with not only normal functioning, but what we love to do most in life.
Your mention of losing function in your dominant arm reminded me of a friend of mine who had a stroke on her dominant side. She had to learn to do everything on her non-dominant side, and was getting frustrated, until one of her kids joined her in not using her dominant side and only using her other side. They made not just a game out of it, but challenged each other to see who could learn to do what faster - from brushing teeth to writing to cooking. Her other kids got in on the action and it taught them not only the struggle their mom was going through, but that you don't have to let this type of thing beat you. I wish you luck in strengthening your non-dominant side while giving your dominant side room to hopefully heal.
It sounds like you need to find an outlet for the negativity you're feeling - is there anything you can do, creatively, physically, etc. to help relieve some of the tension? Different things seem to work for me different days - singing at the top of my lungs, screaming (my kids like to get in on the screaming - it really is a great release just to let it OUT!), tai chi, wii Just Dance (during which I laugh at my stiff and lackluster interpretation of the moves on the screen), or taking a day off to build blanket forts and watch silly movies.
Apparently they only send docs to Yellowknife with Dog Doo brains. MS or med induce demylination and they put you on another biologic??? Are they concerned with your tests as much as you? You are wondering what to do?
You talk about your kids and you still wonder? You sell the furniture, morgage the house, sell vehicles, by a freeze dried meal or bar every time you buy groceries to sustain you on the trip. Talk to your church set up a fundraiser on Fundly, Youcare, Fundme (or all three) stand on the street corner with a cardboard sign. These are your kids.
You get the sam hell out of dodge and to a top/world class medical center and get some answers The toronto clinic arguably the top in the world, will take provincial insurance. They can refer you if going there is out of the question. All destination have lodging arrangements or church (or friends church has connections for a home to stay in) Borrow a bald kid and stay in the Ronald McDonald house if you have to Hitchhike if you have too. When it comes to your kids NOTHING is off the table.
Insanity (I think it was Albert Eistein said whop said it) is repeating the same thing over and over hoping for a different result. If you have MS, then you treat MS. Stelara doesn't help. If its Medicine induce demylination, another biologic isn't likley to change it, if you haven't improved while off the meds. You need some answers. If the final answer is you have what you have then you deal with it. My grandaughter doesn't remember her mom who passed away when she was 9 mos old. She does remember her dad (less all the time) who was KIA in Iraq when she was . She misses her mom the most. So what are you going to do? You as Nym said, be the best mom you can and do what you can when you can, and it will be fine. The Best mom I know is my wifes cousin who has been a quad for almost 20 years now. She raised 6 amazing kids as a SINGLE mom. Granted she had a lot of help. She works full time as pastor in Fargo North Dakota.
Kirsten, I know that Lamb sometimes comes across as gruff and rough. I hope you understand that he is blunt because he cares about what happens to you. In the dark days after my diagnosis (my long “gap”) I really suffered, and at the same time I was so tired and depressed and fogged in that it was hard for me to take advice and take action. During that time, I remember Lamb being harsh with me more than once. It took me a while to get the message, and once I did, I regretted not having considered his suggestions sooner. We all hate seeing you suffer and struggle like this, Kirsten. Please take Lamb’s blunt comments as they were intended – constructive and heartfelt suggestions for your, and your lovely family’s, health and happiness.