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.

While I'm Away

So pretty much my life is in full panic mode.  I can bare a smile for my children but for the rest of the world, I stay unseen.  PTSD is horrible horrible horrible. I'm going to have to go to a trauma group (20 sessions) and hopefully I can escape this nightmare I'm in.  And now I'm on new meds AGAIN and still can't see the specialist i need to see.  And to think...I was doing so well.

I really trust nobody.  I can't help it.  The world lies to me, corners me, and is never there for me.  I want my kids in therapy but nobody listens to me.  I'm barely writing this because I want everyone to know that PTSD on top of MS pretty much has me in the worst depression ever in life.  As if that could ever happen, right? They're worried about me.  I am too.

Friggin' Nervous Breakdown.

I find moments when I can completely calm down with the help of medication to have a very simple but important conversation, then i'm back off into my world because I can't be in everyone else's world.  I only pull myself together for the important stuff then I crumble again, sometimes during. It's really hard. I'm trying to stay to myself so I won't have triggers. And I often fear someone will put me in a hospital but my doctor told me today that I'm just traumatised and nobody would do that to me for that; it's not my fault. I'm always feeling set-up, though.  Weird to explain.  I'm stuck in this place in this time with my mind and so hopefully these meds and therapy will help me out of this hell.

I love my new room.  I haven't decorated yet but I love it.  The person I wanted to help me decorate ...well, i'll have to do it by myself and i'm fine with white walls for now.  I'm too short to climb up on things and my equilibrium is a bit off so I can't stand of anything anyway.  People don't understand that.

Doc is proud of me for gaming again  I can't stay awake that long to play but I try to get in at least three days a week. I really don't want to do it but it's a part of the therapy.  I really don't want to do anything other than sleep.  And I did 8 pushups which was amazing.  Now i'm hurting but that's normal.

It's a severe weather alert going on which means I get to sleep incredibly.  I pray these new meds are not going to harm me.  I plan on using my dehydrator tomorrow to see what it can do since I have some left over veggies from my smoothies.  I've lost all kind of weight so today I forced myself to eat something other than drinking a smoothie.  I hate eating.  I hope I get out of all of this nonsense, really.  

Tingles

I'm on the number 12 Denver bus headed to job and housing interviews and of all times, my right hand begins to tingle. The first thing I do is shake my hand to make sure its not poor circulation going. Its not, that I'm aware of. So what then?

I'm still in relapse. Everything that makes me panic is now intensified. Mainly its finding housing and jobs. But also my panic attacks are being esculated and that's making things worst.

" Numbness of the face, body or extremities (arms and legs) is one of the most common symptoms of MS. Often it’s the first symptom experienced by those eventually diagnosed with MS. The numbness may be mild or so severe that it interferes with the ability to use the affected body part. For example, a person with very numb feet may have difficulty walking. Numb hands may prevent writing, dressing, or holding objects safely.

People with MS who have severe facial numbness should be very careful when eating or chewing, as they may unwittingly bite the inside of their mouth or tongue. People with numbness over other parts of the body should be careful around fires, hot water and other sources of heat, as they may suffer a burn without realizing it.

There are no medications to relieve numbness. Fortunately, however, most instances of numbness are not disabling, and tend to remit on their own. In very severe cases, a neurologist may prescribe a brief course of corticosteroids, which often can temporarily restore sensation."

Sites Cited:

http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Numbness

Panic Anxiety Disorder

Last month was a hard month for us emotionally. The Bennet Colorado experience was both beneficial but also harmful. Initially we felt like we made the right decision on choosing Bennett over Denver, but when you have the opportunity to be off meds for the first time in years, your judgment can be cloudy. Bennett's "unique situation" ended up being a passisve aggressive cestpool of death, isolation, loneliness, and just a whole lot of pathetic people. From having a roommate commit suicide and blaming the landlord ...the landlord being arrested for stalking the neighbor whom she claims murdered her birds, the overly emotional love-scorned so-called mystic, my health being risked by an incoming roommate with active shingles, the inconsiderate remodeling of the restroom including removal of toilet, and the fact that no matter how much we helped out and paid our bills peace was not allowed. We moved after being given two weeks notice to vacate for not agreeing to one on one solo time between the landlord, a self proclaimed "sub" into bdsm and my husband. My husband will never listen to a crazy deranged sub. The experience was really hard. I had to begin asking for outside help, and am still in relapse as of today.

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Mainly I'm having severe panic anxiety. When I was first diagnosed with MS, bipolar and panic anxiety disorder were listed as well. Later Disassociation disorder and PTSD were added. As long as my mind is occupied with relaxing thoughts or clients therapy, I'm fine but as soon as I think about my family being so many miles away or our financial situation, I'm sent into a panic. This is throughout the day everyday. Its not good at all.

Do not exacerbate a panic attack

It is possible that family members and friends will be present during an individual’s panic attack. It is imperative that family members and friends do not escalate the situation by becoming overly emotional. Instead, family members and friends can assist the person who is suffering from a panic attack by remaining calm and reassuring. This is enhanced by, as noted above, being educated about the nature of panic disorder. If family members and friends become anxious, upset, or even angry when their loved one experiences a panic attack, the individual can be adversely affected by feeling guilty, embarrassed, or ashamed. These feelings can often lead to increased anxiety, loneliness, and isolation.

Speaking with Colorado's Human Services department, my husband was able to get resource information for us. We have plans on others coming here to partner with us to lighten the load, but until that happens I can't calm down. If that happens. Thoughts of panic cloud my mind.

Looking for work with/for my husband each day and then re-evaluating the choices of possible jobs has been making me anxious. My only solace is even back in Atlanta I could have relapsed, so at least it's somewhere with safe access.

I miss my children. If I had them with me, I wouldn't hurt as much. I feel so sick inside. I hate living off disability and not being well. I just want to be well. I miss it, too.

Yesterday the doctor approved me to grow well above the normal amount of cannabis for my medical needs. It always surprises me how the doctors are pleased with how the MS is with me...how it could be worst. Cannabis has helped, but in a relapse I'm truly afraid it's not enough. I'm back on xanax and restoril and not happy about it.

Site reference credits:
http://expertbeacon.com/what-do-if-your-loved-one-having-severe-panic-attack/#.VhhPViXnbqA

In complete pain and feeling sorry for myself

In autoimmune disease, the body’s immune cells mistakenly attack and destroy healthy tissue. In MS, it’s the fatty protective sheath around the nerves; in type-1 or juvenile diabetes it’s cells in the pancreas that make insulin; in rheumatoid arthritis it’s tissue in the joint.

Currently, the main treatment is to suppress the immune system, an approach that can leave patients vulnerable to infections and cancer. There are shots that are intended to redirect the attack on cells by tricking them into attacking injected protein.  Still, there are "ATTACKS" and most everything that is out there to take has horrible side effects.

I'm still off the shots.  I removed myself from that treatment therapy in 2009 after a MS relapse almost made me lose my kidneys, and the shots did not stop it from getting as bad as it did.

I hope there is other treatment.  I ignore my MS a lot because my caretaker is also my husband, and no matter that I trust him the most, it's sad to see him have to live with my reality, too. I hope to find another caretaker in the future to give him some time to just enjoy having a wife (not a patient).

The pain is on my right side (the same side that went paralyzed in 2004) .  I can't really get a full body massage because my husband has now began to be in a lot of pain, too.  I sometimes wonder if he has MS, too, or if he is just experiencing some of my symptoms (we are incredibly close and have a really tight bond), or if he has something altogether different going on.  We are each other's caregivers and really always have been.  But this pain is too much for me to bare too much longer without repeated relief, which is what my prescribed treatment was since I'm no longer on all of the meds.  I'm supposed to have intense massage therapy to keep me out of most of the pain, but now I feel helpless.  I often cry when I'm alone, just to get it out of my system (the frustration).

I feel like my condition is getting a little worst right now, so I want to make sure I blog while I can still type.  Nobody knows what the future holds.  I hope mine is one that's still happy and loving, just not so much pain.  http://www.gofundme.com/write-4msawareness