Just call me Grandma!! bahahaha
NOT MY LEG!! Wrong gender. lol Just say no to Jr. High tube socks!! lmao
So the orthopedics office called and said these braces will be better for me to start with, due to the tightness of my tendons. These will help to stretch them out easier. I CAN work these bitches. First NO tube socks, no man legs, cute different colored laces, some fun cute socks, and my hot skinny calves! Maybe even some Swarovski crystals all over. Yeah baby!!
Again, I got this!!
I’m finally back to seeing my neurologist on a regular basis. Last month we decided to have me re-fitted for AFO braces to stabilize my ankles. [foot drop]
I was fitted for both ankles yesterday. While I am unable to walk, we are hoping these braces will help me to stand up using my sit-to-stand. I have not been able to stand due to my foot drop[s] and weakness in my knees and hips. I am hoping for a good outcome. I know it will take some time and a lot of pain, but even the pain will be worth it to me. It was tough fitting me for the braces as my feet literally just hang down. It took some serious stretching and pain to get my feet casted. But, WE DID IT!!
This month my neuro and I decided I will start Tysabri infusions again.
I started Tysabri back in 2011. My blog mentioning it is here. After some time on it I contracted hepA [medicinal] from the medication[s] I was taking. This time I am going to be very careful of the other meds I take while on Tysabri. I will be staying away from acetaminophen and any other med that may cause organ damage. I am being tested for the John Cunningham Virus (JCV) first, as JCV could lead to progressive multifocal leukoencephalopathy (PML)—that usually leads to death or severe disability. I had no issues with this 4 years ago and am hoping I have none this time around. After my AFO fittings were finished, I went by my neuro’s office and I signed all the paperwork to get the process moving along. I will try anything to help myself as I truly have nothing to lose.
Last time I ended up having a power port inserted in my chest for easier infusions, as my veins are shot. I am so glad I did not have it removed when they stopped the infusions. Maybe, somewhere inside of me I knew that one day I’d give it a go again.
I’m trying to keep a positive attitude about all of this. I know I will still have my nightly cry, but I have to get it out somehow. Thankfully, my caregiver and BFF Steph, never lets me wallow for too long.
I GOT THIS!!
OMG…this says it all! In tears reading this. WOW! Someone does understand! Although I am not able to walk anymore, it was exactly like that when I was.
What living with MS feels like..:
When We Say We Can’t do Something Because We don’t Feel Well, Put yourself in Our Shoes By Using The Examples of our Symptoms Below…
1- Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down – how ya’ feeling now?
2- Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.
3- Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.
4- Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won’t fall down.
5- TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.
6- Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.
7- Tingling: Stick your finger in an electrical socket – preferably wet.
8- Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya’ breathing?
9- Shots: Fill one of our spare needles with saline solution, saline won’t hurt you, we would love something worse but don’t want to end up in jail. Give yourself a shot everytime we do our shot.
10- Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.
11- Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.
12- Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.
13- Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one…Bzzzzzzzzzzzzzzzzzz
14- Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.
15- Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.
16- Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.
17- Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet….Get a very large tattoo in your most sensative area.
18- Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.
19- Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep – it’s not the same at all.
20- Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.
21- Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appear.
22- Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead…optional of course.
23- Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms…..hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.
24- Buzzing Feeling When Bending Our Heads to Our Chest (L’Hermitte’s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.
25- Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.
26- Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.
27- Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you’ll get it.
28- Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.
29- Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don’t move. Think about this every night wondering whether something on your body won’t work the next day when you wake up.
30- Swallowing: Try swallowing the hottest chili pepper you can find.
31- Heat Intolerance or Feeling Hot When it’s Really Not: You are on a nice vacation to Alaska. It’s 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms – welcome to our world.
Then Finally…
32- After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it’s all in your head and that some exercise and counseling is the answer.
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Peace!!
Here’s my MS in a nutshell; cannot walk, cannot sit up on my own, cannot get out of bed without using a Hoyer lift, daily pain, double stoma girl (colostomy, urostomy), numbness, fatigue, migraines, shakes, occasional bedsores, unable to shower alone, degenerative disc, obviously bed-ridden and wheel-chariot bound, drop foot, stiffness, pain, did I say PAIN, living in a prison that IS my body, no independence, unable to drive anymore, insomnia (severe), primary progressive MS (aggressive), hot and cold issues, memory issues, brain fog, kaleidescope eyes, dizziness, depression, anxiety, and the list goes on!
I fight every day, and the fight is exhausting.
I won’t stop fighting.
Hope is paralyizing. I won’t stop hoping.
I want to give up daily. I won’t give up.
I will be strong!
On March 12th, I turned 50. I told myself that on this day I would be able to stand up again or at least be able transfer to my wheelchair. Well, didn’t happen.
I’m sitting here, on my bed, listening to my baby Gatsby cry. When everyone left the house, they left him in the from of the house. I can’t do anything to get him in here. It’s killing me that I am not able to get out of my bed. I’m so pissed off right now!!!! Frustration Central here!!!
This was’t supposed to be my life! And for those who might say that life’s not fair… Fuck You! I know this first hand. The funny thing is that the people who usually say that, have no health issues or anything else for that matter! I think I’m allowed to be be pissed!! Since my fall five months ago, I’ve been bed-ridden, unable to get get up w/o using the 900.00 lift I had to buy, and utterly alone.
I do put on a ‘happy’ face most days, or at least I try to. This is why I have not blogged for some time. Even when I’m angry and depressed I usually add a dash of humor or attempt to be funny. I make fun of my illness to get through… but ya know, it’s NOT funny, there is no humor in this. I’ve been fighting since 1986 according to the MS specialists at UCLA. I’m fucking tired. I’m trapped in a body I hate, ummm, scratch that… I’m trapped in a prison that is my body. Try spending 24/7 in bed, relying on, begging people around you for help. No privacy, no independence, feeling like a burden, in constant pain. [knees, back, chest, shoulders, neck, etc.] Thankfully not usually at the same time.
Next month I go back to an MS specialist to get on a new poison err medication to try and help me get a lil something back. Those who know about this wonder why I’m not excited. Why? Well the last 4 MS meds actually helped and I got excited… but the excitement faded when the side effects were killing my liver so I had to stop. The more excited I get, the bigger the fall. So, excuse me for erring on the side of caution. I’m tired…
I truly wish I had something funny to end with, but it’s just not in me right now. Think I’ll take something to help me feel no pain so I can get through the shit that is my life. Call me the pity party Queen if you will. Frankly I don’t give a shit. Hmmm maybe I’ll go buy some shoes I won’t wear anytime soon…
BTW… being 50 sucks!!!
After a bad fall about a month ago, I’ve been in and out of hospital emergency rooms and spent a little bit under a week in hospital. Lotta good it did, as I’m worse now than I was before I went in. I need in-home care I need help but the doctors keep blowing me off. And my doctor’s nurses, forget about it incompetence galore!
They keep telling me they’ll call me back once they get information about in-home care. Has not happened at all. They don’t even call my prescriptions when they expire anymore. I have to call and remind them. Yeah that helps with my stress level! I’ve been with the same doctor for 17 years!
I can’t even get into what happened in my last hospital visit a couple of weeks ago as it just brings back too many awful memories. Not as bad as back in 2009-2010 but almost.
At this point I’m completely bed ridden, my legs do not work at all I can only move them if somebody moves them for me hard to transfer to my chair I won’t even get into going to the bathroom. LOL that’s way too much information… TMI!!
Bottom line I need home health care, and my doctors are ignoring me and not helping me. So me, being the bitch that I am, I have an appointment with a new neurologist on January 28 and an appointment on the 18th of this month with the new internist. I’m done, and I’m taking charge and taking back my power!
For those who know me, know I’m pissed and when I get pissed I get shit done. They know not who they are dealing with! LOL I’m done believing that this is it for me and I’ll never move again that I’m going to be stuck in a bed the rest of my life.
I Even got my new wheelchair and it’s the bomb, but I can’t even transfer to it. So what’s the fucking point right now!
Fear-Pain-Anger-Depression
I really do wonder sometimes… What’s the fucking point!
[sorry for spelling and or grammar mistakes talk text doesn’t always work exactly as it should]
Is this the medication I’ve been waiting for? The one to give me hope?
In a nutshell, this medication helps you regain leg strength. Click on Ampyra above for the full description of this medication.
My MS counselor told me about a woman with Secondary Progressive MS who is taking this. She is walking again. At this point she is re-learning how to walk. Funny thing is you do forget how to walk. When I used to use my walker I had to remind myself how to move my legs right. So, it seems this medication may work for all types of MS. I have not heard any stories for Primary Progressive, so maybe I can be the first!
Now, I do not expect miracles. Even getting back some leg strength to be able to transfer easier would make my day. Hell being able to get into bed on my own would be amazing!! So, I have a call in to my Neurologist. I am hoping he will call me in a scrip for it. We have talked about before, but I needed to do my own research on it first. This time I am not going to let side effects cloud my decision. If I get any, I will discontinue using it.
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Now, here’s the ‘nothing comes easy for me’ part. My left knee hyper-extends 20 degrees backwards. This cause lots of pain and torn meniscus issues. I had surgery some years ago to fix the tear, but last year was told it was torn again. I have not had surgery as it will keep happening if they do not fix the problem causing it… the hyper-extension [ligaments in the back of my knee are shot].
Problem, no orthopedic will do it. Reason, I have MS and am in a wheelchair so why. The insurance companies will not cover a knee replacement on a cripple. So, if I get leg strength back, what will it matter as my left leg will hinder walking for me. Now they have offered me braces. Have you ever worn a knee brace to stop hyper-extension? They are bulky and they hurt. Thanks, but no thanks. Since I’m not some sports figure I guess they figure why bother. Well I’ll tell you why…
I deserve quality of life just like anyone else. I deserve the same surgeries for this problem just like anyone else. One sports orthopedist told me that this surgery might keep me down, maybe six months, unable to move much. I about pissed myself… REALLY like that will be a big change for me. The end result might be I am able, with the Ampyra to walk again, even if I still need walking aids. I held myself together and when we left that guy and got in to the car, I cried. It was the same from the doctor that did my knee surgery.
Why doesn’t anyone give a shit about us? Why are people with disabilities treated like second, shit third class citizens? Why don’t we deserve the same chances? I’m 46 years old, I have many years left, why won’t they help me?
I am going to go back to my knee doctor once I start the Ampyra. Maybe if there is progress and he sees progress he will re-think the surgery. Oh, I have some swamp land to sell you too… notice my subtle sarcasm! rofl
I am the squeaky wheel kind of girl though. And this will end up being my new project I’m sure. Wait’ll they get a load of me…
Blessing and Hope!
I’m going to start a series of blogs on, you guessed it, Living with MS. Each blog will have a theme to it, ie: newly diagnosed, medications, family issues, friendships, exercise and nutrition.
My mini disclaimer: All of the blogs will be from my perspective on my life with Chronic Progressive Multiple Sclerosis. I am not a doctor and will never tell anyone what they should do for their MS. We are all different in our MS journeys as we are in our lives.
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My Journey for the truth began after the birth of my son in 1994. I was overly fatigued and started to fall quite often. It was chalked up to bad ankles [from ankle breaks when I was younger] to postpartum depression. I had been diagnosed with CFS in 1986 at the age of 22, so they added that to the list. In May 1996 my twin daughters were born and walking became quite hard. I slept downstairs with the girls in their bassinets for the first few months. Fast forward to July 1997. For months my left ankle would twist and I would have serious trouble walking. I had been to the doctor any times during this year and told the same things as before; bad ankles, postpartum depression, CFS. Finally I got mad and made yet another appointment. This time I saw a Physicians Assistant, he talked to me for a bit then asked me to walk for him. The next thing I knew he was setting me up for an MRI…a What? The next month was kind of a blur. Mri’s, evoked potentials, spinal taps. Then then the results, Mrs. Radford, you have Multiple Sclerosis. Silence!
I do not remember too much of the next months. More tests, learning how to inject a 1.5 inch needle into my thigh, crying, denial, more crying, then complete anger! At that point I had ‘the good’ MS. REALLY?! Relapsing-remitting MS. I may never progress, might be in a remission for forever even. Well, my remission never came, but my progression did.
During the next 7.5-8 years I got two second opinions at the UCLA MS Clinic by their top MS Neurologists. Damn, both said, “Mrs. Radford, you do in fact have MS.” Bummer!
From 1997, I went from ankle braces to crutch canes to walkers to manual wheel-chariots to my now power wheel-chariot. Not really where I expected to be at 45 years old.
So, in a quick nutshell, this begins my journey. I am in the battle of my life. For some, this may not be the worst battle out there, but it is my battle and it is happening to me, so it is the worst out there. Living with MS is a journey for those with MS and the people who love them. Maybe, in some small way I can help someone through a rough time or even share a few laughs. Hope to hear from you.
Blessings and Hope…
Making it Through the Rain 