been awhile

I just updated my carepage... figured id "cheat" and use it to update the blog too... I should probably update this more often too. I have som funny things Ive seen

I know it has been awhile since the page has been update and lots of you have been so wonderfully been asking how I have been doing, asking what’s been going on, how can you pray for me ect… and well its really hard and complicated to keep a care page updated when you have chronic illness because there is ALWAYS something, and I mean ALWAYS something whether its thrush, ear infection or having stress fractures in your feet. It also gets tiring writing about things because it’s a constant reminder to me of how sick I really am, and well that’s no fun. But here I am updating the page because well there are things to update you all on and I appreciate all the wonderful support that you give me – and well things are rough now and we could use an extra dose of lovin & prayers these days J

OK… in attempt to catch you up to speed since JULY yikes! In bullet form here we go on the major things, especially things we have been following on the page.

-       Fall has been rough… first time not going back to school whether as a student or a teacher.  I spent two weeks in CDH for an RA Flare. My fixed income changed because of disability status and my insurance changed. EEK.

-       Left knee with the GIANT wound -After four and half months, it is finally all closed. YAY. What a crazy adventure that was. We are now just working on try to work on scar healing, getting it to go from purple to pink - so I can have surgery on the knee. I DO need a total knee on this knee but CAN NOT have surgery until the scar on the knee is PINK because of how fine and fragile the skin is on the knee, until then we can only do pain management – boo.

-       Right Knee- Norma. We found out that when I fell I cracked the knee cap-hence why I have been in so much pain. It has since healed there is nothing to do- I just live with how it is. I injured my ITband pretty bad so we are working on that in PT now again. We cannot and will not do surgery on Norma because of how complicated my body is.

-       Been having some real bad GI problems on and off since July, got cDiff in summer so now infections are harder to treat in me and will soon be having some GI testing done over next week

-       RA flare really messed with both feet and have been in PT for both of them

-       Have had multiple bad ear infections in and recently learned that my TMJ is now being effected by RA (if you knew me in high school you know this is NOT cool)

-       Diabetes has been a roller coaster since RA flare but slowly being back on track. Got really sick to do one medication and had to go off it and trying to figure out new treatment plan

-       Addisions is still up and down but lately it is “stable” we are jus trying to figure out how taper down off the prednisone, and it of course does not go well

-       Sojgrens has been acting up like it usually does in the fall-dry dyr skin, cotton mouth, bloody noses ect.

Other big news… With everything going on we thought it would be good to get some fresh eyes to look at things. My insurance does not cover out of state so I cannot go to Mayo, Hopkins or Cleveland Clinic. SOOO I currently am in the process of getting things rolling to be seen at the University of Chicago- not sure what all this will entail we are still working out ALL SORTS OF DETAILS, we just know that’s where I am going. They have my information and my primary cares info and we are working with a friendly man named, Lloyd. I am so thankful for my brother and his wife  and so THANKFUL for them -its getting us places thereJ They will get my file, I will see specialists, probably have some test done ect and we will see what they have to offer in terms of my treatment. This does cause me quite some stress & anxiety but I know the end result is  hopefully a good thing.

Currently… we are working on figuring out GI things & GI testing… going to PT for both feet and my ITband for right knee, Norma… looking into TMJ issues AGAIN… figuring out new insurance… working on finding out governmental assistance and new finance situation… and getting things ready for U of C…

just trying to make through each day! LOTS OF CHANGES THIS FALL, and they haven’t been the most fun, so please keep the prayers coming my way, I appreciate them. I will keep you posted as things start to progess with U of C!

Thanks so much for everything!
Lots of love

Mandy

"Whatever I have, wherever I am, I can make it through ANYTHING in the One who makes me who I am" Philippians 4:13

whats been going on

Well.. I said I would be back so here I am. The past two months have been some of the most trying days I have had, and I am so thankful that they are over and in the past. Here is a brief rundown of what went on...

In January I had surgery on my hand/fingers. Surgery was successful and I started OT. However, three weeks after surgery I had a "hole" in my thumb that was not healing from my the incision. It was considered a "non healing wound." Because of this I had to have ANOTHER surgery for them to fix the "hole" and restitch it close. Since, I needed another surgery it put off my RA infusion/Medication. The second surgery the stitches were going to need to stay in for three weeks -- meaning I would have to go a total of seven and half weeks with NO Actemra Infusion (which is my miracle RA medication) RA meds suppress your immune system and hinder the healing process. IT WAS AWFUL. Every day my RA symptoms got worse. I ended being hospitalized the week before my infusion was due and stitches were to come out because  the pain was so bad. My eyes got really affected by the sojgrens and I got this awful eye infection while in the hopstial along with a UTI.  I was in some of the worse pain ever. I wanted to die. I didn't think I Would be able to hack it...but I did. I got my infusion two weeks ago and slowly have been "coming back from the land of the the dead." I am due this coming Thursday April 4th for my infusion, which should really help me get to back a some sense of normally again. I am so thankful for all my friends and family who rallied around me and helped me through the difficult time. I guess we REALLY know that Actemra is the right medicine for me.          

Today I am doing well. My eye is doing better, we took out the tear plug becuase I am making tears! My cataracts have gotten worse and my vision has drastically changed in my right eye, so we are keeping an eye on some things with that.  I hurt like normal RA aches and pains. My knees are really bothersome but I am taking it one day at a time. Because I hit rock bottom I feel like I have to start over with things, which I guess is ok... the weather is changing, so I will change with it. I am trying to take little walks every day and on Thursday managed to get to the pool. I really need to work on my stamina, strength and just trying to do more... so baby steps.

So... hopefully I be back to blogging a little more.

I am excited for this weekend, weve got family in town, a baby shower and easter! Fun times!!

LATELY

Yes... its this type of post again... lately... I have so much to say, just don't know who wants to hear it and is it really important? However, lately I have felt defeated, overrun, frustrated and alone - so not very fun. Being in and out the hospital is quite stinky, then realizing there is NO END in site - ever for living with these two diseases... So, I hit low points, and lately we have been low. However, I have great support with my friends and family and therapist who help me a lot.

Anywho... healthy wise.. My Sjogrens has really been bothering - really bad bloody noses, dry throat and my eyes are killing me! So we are trying to figure out some new things to try. I am scheduled for hand surgery this Thursday January 31 to do a trigger finger release of three fingers. We are also continuing with doing the Actemra infusions every three weeks and that seems to be helping a lot more than every four- i don't have the the 4th week slump/shut down. WE still struggle every week to get an IV  which is no fun at all. My Addison's has been controlled lately and we are still working on tapering the steroids, slow and steady. On Thursday I had my last orthovisc injection in my knee - which KILLED, but am hopeful that I will get a relief from the injection despite the pain they initially cause. My skin is becoming an issue again- probably due to all the weather changes, so I will see dermatology soon to address my rashes and falicuitis.

I have really been thinking about what it means to live a life full of suffering... I am thankful that I have a God who cares for and me loves - i know He will help me through anything, but man oh man is it hard!!

Eyes

On Monday I went to the eye doctor. I went in because my eyes have been REALLY bothering me and its been a year since I went there. Well, they did EVERYTHING to me... I mean everything! I have to get my eyes regularly checked because of the medicine I am on and because of my Sjogrens.

They tested my vision with my current glasses. Found out my prescription is wrong.

getting my vision checked without glasses and finding out new prescription.

I had a total of SEVEN different drops put in my eyes.

dryness testing. Those pieces of "papers" go in your eyes and it measure the amount of tears I produce.

Had my eyes dilated. Had tear plugs put in.

We found out that I have small cataracts in both eyes, this is probably from the prednisone. They are small so we are just keeping an eye on it. It was also turns out that my eyes pretty much don't make ANY tears from the Sjogrens, so I need to do a better job and artificial tears and will stay on Restatasis. I am going to see Optometry to get my glasses and prescription checked and changed. It was SUCH a long appointment and we went over everything.