Sunday, July 2, 2017

The Relapse: RRMS and how it affects me

From May-June 2017 I was in a Multiple Sclerosis relapse. For an average of thirty days I progressively lost use of my right hand. I'm better now, by God's grace. My heart goes out to all MS patients and the ones who care for them, the families who are affected by it, and especially those newly diagnosed. It's one hell of a ride fighting this monster but it's doable. I decided to use my left hand.

Decisions,lol. My left hand wasn't close behind the right considering I'm right handed. I had to LEARN to use my right hand and when I tell you it was challenging...whew, it was.  But I did it. I couldn't write but I could feed myself after practice (until then hubby fed me or I ate finger foods). With an auto immune disease/chronic illnesses such as Multiple Sclerosis, if course my panic anxiety was on full blast and so was my depression. I panicked because I was unsure of what else was going to "go out".

I'm now on Gilenya since May 24, 2017 (a disease modifying drug or DMD) that is said to slow down the progression of Multiple Sclerosis. So far I have not felt horrible like I did with Rebif, the old dmd I took. I take a pill instead of injections like before but I still long to be med free like I was prior to the relapse.

Wednesday, November 30, 2016

Making Up The Bed

Lately every time I say I'm hurting, everyone around me says that they are hurting too.  I suppose it makes me feel like I'm not alone.  Weird, right...connected by pain.  For me, making the bed is a hard thing to do because it really hurts my arms.  I'm sitting here, just having made the bed, and my arms feel like i've been lifting weights.  My reality is that nobody truly understands this, so i've stopped asking for help all the time. For what?  If I depend on others, the bed won't get made.  So I do it in pain because I have to.  The same way I have to live this life in pain.   

Friday, November 4, 2016

Back against the wall

Honestly, my back feels all sorts of broken. I'm in pain and I hate it. I can't sit straight because my back hurts. I can't sit crooked either without pain. I really can't get comfortable.
I'm smoking Tangerine Kush. I got it from Lotus Medical and was told it's very strong. See, it's known to relieve pain and allow for relaxation.

I'm in the process of renewing my "red card". It's actually purple, which makes the color a returning favorite of mine. I used to love the color purple which is why in 1983 I discovered Alice Walker's THE COLOR PURPLE.   I was in the 5th grade. That book shocked me, much like this back pain is now. Everything is like this pain because I don't know what it feels like not to have it.

I'm laying on my side now. I tried laying on my back, but it's too sore.  I feel like this is skeletal pain. I don't want to take pain meds for it so that cannabis is helping. I also got bath bombs (I hope they work). I think without cannabis, I'd lose it. I'd surely have to take opiates which I do not want to do again. I'm going from lots of medications to none and I want to keep it that way. Cannabis allows me to relax so that the pain is tolerable at least.

I hope nobody else gets MS.

I feel trapped inside this pain. I'm panicked like my back is against the wall and if I don't improve I will deteriorate. I need to take yoga, at least, but I'm so sore. Regular exercise like sit ups and push-ups are unbearable. I'm stuck.

I'm not the only one. I've got a friend whose back pain is so severe that she is in tears. I wish I could cry about my pain but crying would probably hurt. My body hurts like I've been struck by a moving vehicle. My mind is all over the place. Guess I'll smoke. 

Tuesday, November 1, 2016

Musculoskeletal pain please go away

My body hurts.  Pretty much all the time.  I'm dealing with it.  I'm currently not on any medications, and so there is no relief from narcotics.  I'm having to choose between my comfort and my organs; I choose pain.

Musculoskeletal pain (nociceptive pain) is caused by damage to muscles, tendons, ligaments or soft tissue. Musculoskeletal pain in MS feels like the pain from common injuries unrelated to MS, such as a sprain or pulled muscle. ... Muscle or joint pain due to changes in posture, spasms or muscle stiffness (spasticity)

Cannabis, hot showers, organic herbs, and any other pain relieving assistance I can get, I'm all for. As long as it's as organic as it can be, I'm with it.  I find that putting unhealthy things into my body has really damaged my well being to the extent that I'm nauseous, and extremely paranoid.  Big Pharma has done a job on me, and now it's time to regain some of my soul. I'm trying...one day at a time, I'm trying.  To cope.  To live.  

Musculoskeletal pain please go away

My body hurts.  Pretty much all the time.  I'm dealing with it.  I'm currently not on any medications, and so there is no relief from narcotics.  I'm having to choose between my comfort and my organs; I choose pain.

Musculoskeletal pain (nociceptive pain) is caused by damage to muscles, tendons, ligaments or soft tissue. Musculoskeletal pain in MS feels like the pain from common injuries unrelated to MS, such as a sprain or pulled muscle. ... Muscle or joint pain due to changes in posture, spasms or muscle stiffness (spasticity)

Cannabis, hot showers, organic herbs, and any other pain relieving assistance I can get, I'm all for. As long as it's as organic as it can be, I'm with it.  I find that putting unhealthy things into my body has really damaged my well being to the extent that I'm nauseous, and extremely paranoid.  Big Pharma has done a job on me, and now it's time to regain some of my soul. I'm trying...one day at a time, I'm trying.  To cope.  To live.  

Wednesday, October 5, 2016

Meibomian Gland Dysfunction and Dry Eye

Today I went to the eye doctor to check on my eyes. I've had so many headaches and loss of vision that I wanted to find out what was going on.  Denver has a wonderful health system, and I was taken very good care of.  My doctor found me to have Meibomian GLand Dysfunction and Dry Eye.  The optic nerve tests looked good, though there was some swelling in one of my eyes that was an initial concern.  I was given a glasses prescription, and instructions on how to treat Meibomian Gland Dysfunction and Dry Eye.

More about Meibomian GLand Dysfunction and Dry Eye:

The tear film has three basic layers; oil, water, and mucus.  Problems with any of these layers can cause dry eye symptoms. The oil layer for the tear film is produced by meibomian glands on the edge of your eyelids. They secrete oils that allow the tears to stick to the surface of the eye.  If the glands are deficient or clogged the watery layer of the tear film evaporates quickly, leaving the eyes dry.  Sometimes people with oil layer deficiencies will have frequent reflex tearing as a result.

One thing that helps is fish oil or flax seed. These are things on my MS diet.  I'm so glad to know that these are also helpful in what's going on with my eyes. I will still have to have a MRI to see if there is still an optic cyst, etc.  There's some pressure behind my left eye.  With Multiple Sclerosis, vision problems are common so I'm glad I got on top of this.

I'm also still gaming on PS4 GTA online.  It's challenging with my eyesight but at least I know what's going on.


Wednesday, September 14, 2016

Abilify

Today I started Abilify.  No, it's not the cannabis; it's the world that i'm trying to fit back into and this is part of the treatment.

I said before that I do not play about mental health.  In 2004 when I was diagnosed with MS, I was mostly upset because it affected my actual brain.  That's going all in.  I was devastated.  I began twitching long after the initial relapse was gone and I was in "MS Remission" because I'd have to relive the "bad news" over and over and over again constantly.  Learning to communicate with others was simple enough because I would hide the fact that I was reliving it over and over again.  And thais the PTSD aspect of it and I typically don't get treated via pharmaceuticals but because so much of my cognitive problems have gotten worst over the years, fast forwarding to 2016 as of today I am on four different psyche pills to keep me sane.  It was three initially but because I really wanted to punch the MS doctor in the eye, and the fact that I can't let it go, we felt it necessary to treat my psyche issues asap instead of letting them go, and they understand how I was treated in that MS appointment was wrong. Thank GOD I had a witness, ya know, and #kochecooper to see about.  It would have been a hot mess had I just gone off on him for not giving me adequate treatment because he wanted to push more pharmaceuticals.  This, coming from a man who clearly did not read my chart and know that I'm a full psyche patient.  smh  I don't know, I stay to myself when I have to however the pain of MS has been being treated by organic means because I refuse to put some MS stuff in my body if they do not have a cure for it because the risks are too great.  And I know they are too great because I have an entire team behind me helping me not put unnecessary meds in my system.  Apparently MR MS NEURO wasn't on board, smh.

Today I drank water and ate a salad.  I ate a lot over the last few days with a full time caregiver but alas I have a few days on my own.  I'm going to try to eat.  but MS does give huge head pain and I was denied massage therapy or acupuncture unless I pay for it on my own by the MS Neuro doctor, so that's where I a.  The pain is too unbearable and I have no idea if there is anything wrong in there but they want me to take meds not even having a MRI.  Clearly they saw that I was not walking straight and no, I hadn't taken ANY treatment that morning, went in just my un-medicated self.  My pain was at a 5 perhaps because I got a brief massage before the office visit.  So today my head is hurting out of my mind through my eyes, in my temple, in the back of my head, on the top of my head and when my sis called she said "go smoke" so I did and it finally went down a bit.  But then it came back and I tried to sleep it off but I wasn't at home so it was very uncomfortable. I don't want the pain meds, I want the massage and acupuncture.  It's just not fair. They know what I go through.  THere is no NEED to take those meds to slow down the progression if you see that yes ,I have MS, but I am managing everything with the help of being in a zen environment as much as I can and getting the proper support I need and being in agreement with me and my tea on my treatment.  This neuro ms doctor told me it was too expensive to give me a mri.

Anyway,I still have time to make a decision.  I have to research more, but I have readers block and writers block becuase ive been mad at the doctor.  smh.  mad at life.  sometimes i'm mad then sometimes i'm joyful so it's all weird.  But I'll save that for another post.  That's another story altogether. Peace, love, and light and please pray i get some organic therapy for my pain.  My entire body is cramping so i'm going to sleep.  Oh, and not to mention over active bladder, also something acupuncture could stop.