Personal struggle with debilitating illnesses

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Shann75
New Member


Date Joined Jun 2010
Total Posts : 14
   Posted 6/16/2010 4:47 PM (GMT -7)   
I am new here and would like to share my story. I am a thirty-five year old mother of three. I have a 16 yr. old daughter, 10 yr. old son, and an 18 mo. old daughter. And boy do I have my hands full! When I'm not changing diapers, I am texting my 16 yr. old and reminding her not to drinking and drive (or drink period!) or ride with anyone drinking... And my son is in a Division 2 baseball league, that requires alot of traveling.

I will try to make this long story as short as possible. During my recent pregnancy, I was having a lot of back pain from an old injury to my spine. I couldn't wait to have her and get out of this pain. Little did I know that was just the beginning. When she was just 3 mos. old my husband and I lost our home as a result of him losing his job. We moved to a much smaller home and no one was happy about it. My 16 yr. old went to live with my parents after much fighting about who was to blame for losing our home. (No one said blending a step family would be easy, especially with a teen.)I started to slip into a terrible depression. That is when I began noticing odd things happening to my once health body. My shins ached, my muscles felt exhausted, my legs would vibrate from the inside out, I couldn't stand to be touched, (it physically hurt for my kitten to brush against me) my hands ached and my fingers felt like I had rubberbands around them, my knees hurt when my pants would rub against them. I could go on & on. I didn't know what was going on! My family doctor ordered an MRI of my brain, that came back normal. He referred me to pain mgmt. I was put on 4 Lortab 10mg a day. Which helped the pain for a couple of hrs. and I continued to have all the other issues with my body. The pain doctor did not want to look into it and just kept giving me pain medication. He finally ordered an x-ray, after much hesitation. It came back "NORMAL." After 8 mos. of this I went to a Chiropractor (I've been to several over the years and never had much success-actually it made it worse.) But I was desperate. He also did an x-ray and he said I had 2 pinched nerves and refferred me to a Nuerologist. He also diagnosed me with Fibromyalgia. I had to wait 2 months to get into the Nuerologist. They confirmed the Fibromyalgia and ordered a CT Scan of my spine. They also diagnosed me with Facet Joint Syndrome, (with arthritis) Restless leg Syndrome, and Pernicious Anemia. They also tested me for RA and it came back "NEGATIVE." The Nuerologist referred me to an Orthopedic doctor (who was so mean to me!VIEW IMAGE ) He even threw down his equipment in frustration with me! By this point, when I would tell doctors that the pain medication only helped for a couple of hrs. they assumed that I was a "Seeker." But the Ortho. doctor did tell me that you can test negative for RA when you are actually positive for it. I went back to the Neurologist because the Ortho. doctor said he couldn't help me. The Nuerologist ended up dropping me as a patient. By this point I was at the end of my rope. I felt so hopeless! Even though I had already been diagnosed with terrible health issues, I knew there was still more going on. I went back to my family doctor and he referred me to a wonderful Rheumatologist. She was so compassionate and she confirmed that a negative Rheumatoid Factor doesn't rule out Rheumatoid Arthritis. She did a panel of blood test and I just got the results yesterday. I do in fact have RA. My CRP test came back very high. This test measures the protein in your blood. My white blood cell count was also very high. And I was also diagnosed with Scurvy- a rare Vitamin C Defiency. (Like I needed something else added to my list of diseases and syndromes!) But I have to keep positive thoughts and be grateful that after a full year of unexplained health problems, we finally got to the bottom of everything.

I can't even explain how sick I am some days! I honestly have laid in bed praying that I would die. At the age of 11, I watched my identical twin die from a massive asthma attack. I have questioned God, asking why I lived if I am going to be in misery.

My quality of life has gone completely downhill. And to make matters worse. I lost my job 4 months ago. I had been the Childcare Director of a School Corporation, overseeing five other ladies and two schools for 7 yrs. I loved my job! The children there were like my own. The school was aware of my recent health issues, but showed no mercy! On the days that I was running to the bathroom to throw up (sorry!) I would go on home and work from my home computer. I had to keep my program running smoothly inspite of my health. In February, I was called into a meeting where I was repramended for taking work home and was placed on a 2 wk. suspension. A few days later I get a knock on the door and it is a police officer. He wanted me to go to the station. I was freaking out and didn't know what was going on, my mind was racing. When I got there, I was informed that the school wanted to have me arrested for "Timesheet theft." Since I had left the school grounds with paperwork and got paid for working, I had apparently commited a "crime." I am still waiting to see if an arrest warrant will be issued.

My husband is still unemployed. We had to move again! We are in a 2 bedroom home with 3 children! We are surviving on unemployment benefits. I feel terrible that my health has put such a burden on our family. My out-of-pocket medical expenses are almost as much as our rent. I think about how much I could do for my children with the money I am spending to survive. But I am a strong Christian and I know that GOD will not put more on me than I can bare! This to shall pass.....And my family will be stronger because we made it!

I hope that someone out there has taken the time to read this- Sorry it is so long. And I still have thoughts racing through my mind. I could write for days!

myjoy
Veteran Member


Date Joined Feb 2009
Total Posts : 686
   Posted 6/16/2010 6:42 PM (GMT -7)   
Shann, you are one tough cookie, and I commend you! You have certainly had your share. But you are right, God is with you. I wish I had some magic answers for you. But I don't. I will pray for you. I'm glad you finally got all your diagnoses. Have you thought about SSI? I have applied for it, and am still waiting for my hearing. Someone with all the things going on that you have, should be able to get it.

Anyway....please hang in there, and I'm glad you shared your story. Better days are coming.
DX fibromyalgia 2007, osteoarthritis, obsessive-compulsive disorder OCD, depression, anxiety, sleep apnea, hysterectomy.

fluoxetine (prozac), welbutrin, trazodone, lorazepam, nabumetone, hydrocodone, c-pap machine.


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 6/16/2010 7:25 PM (GMT -7)   
Hi, Shann, and welcome to the forum.  I'm so glad you found us and joined our family.  I think  you will like it here.  We have members that love to help one another and, as a bonus, we really do care about one another.
 
I'm glad you finally got a good doctor.  I hope tests were run to rule out other illnesses.  Fibro has many of the same symptoms as other illnesses.
 
Be sure to check out Fibro 101...the second thread on the fourm.  There are links to good info about fibro including a list of symptoms and a link called What Else Could It Be.  There are links about malic acid/magnesium supplements and vitamin D3 that have helped many on the forum.  Many with fibro seem to be deficient in these vitamins and nutrients and that can cause more pain and fatigue.  I take these and they really have helped me a lot.  You might ask your doctor about it.  Mine said he didn't think they would help (malic acid/magnesium) but he also said they wouldn't hurt me either so I tried them and they have helped me.  I also use ibuprofen with food and extra strength Tylenol to help with pain.
 
There is also a link that may be able to help with prescriptions.  There are two plans that are listed and perhaps that can help you a little with the finances.
 
Do keep moving.  If you sit or lay too long you will be stiff as a board.  There are some gentle stretching exercises that really do work in the Fibro 101 thread.  Also, find a gentle exercise that you will do daily.  I walk and swim as my exercise.  When I started out walking, I couldn't go very far but I kept it up and now I can walk a lot further.  The exercise also helps with the pain and the fatigue.
 
I'm sorry you are going through all of this but there are brighter days ahead.  Just keep the faith.  God does get you to the other side.  I have found when bad things happen to me, I end up in a better position eventually. 
 
I'm happy you are here.  Don't hesitate to ask question because we are here to help you.  I hope to hear more from you soon.
 
Sherrine 
 
 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


KellieJo
Regular Member


Date Joined Apr 2010
Total Posts : 382
   Posted 6/16/2010 8:15 PM (GMT -7)   
Sorry and praying for all that is going on, you have faith and hold on to it. There is a wonderful group of people here.

Statgeek
Veteran Member


Date Joined Jul 2008
Total Posts : 1495
   Posted 6/16/2010 8:53 PM (GMT -7)   
I am sorry to hear that all of this is happening and all at the same time. I hope you find relief soon and a job, too.
gentle hugs,
Sue

Shann75
New Member


Date Joined Jun 2010
Total Posts : 14
   Posted 6/17/2010 12:25 AM (GMT -7)   
Thanks for all of the encouraging words! I've been meaning to joing some type of support group and so glad that I found this one! It's 3am, and I'm up with my 18 mo. old.  She still has not began to sleep through the night.  But she sleeps in mommy & daddy's room w/ us and it makes it difficult. - And I do believe that it's been hard on the baby also to live in 3 diff. homes since she was born. I have gotten her back to sleep and now I can't go back to sleep. I will chat more later, because I probably won't make any sense...... Lol 

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 6/17/2010 3:36 AM (GMT -7)   
Hey there! First off...welcome to our family. Secondly, great name! I am sorry you have so much going on with you right now, but you have found a great place to be. As you can already see everyone is wonderful here and very supportive. I really hope you stick around because we really do care. Take care and here's to a low pain day!
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines


sotiredoffibro
Veteran Member


Date Joined May 2010
Total Posts : 1556
   Posted 6/17/2010 5:58 AM (GMT -7)   
Hi Shann, I am so sorry you and your husband are going through so much right now. I will be praying that things will be looking up for you in the near future. Even though you might not feel strong you are. Everything you have been through and you are still able to keep your faith shows your strength. Take care and keep us informed.
Shirley

kathydownunder
Regular Member


Date Joined May 2009
Total Posts : 447
   Posted 6/17/2010 6:00 AM (GMT -7)   
Hello Shann,
Welcome i think you will find friends here we all know to some level what you are going through. I first got fibro when my daughter was 9 moths old. We didn't know it but it turns out it started when I was pregnant with her. Always remeber there are people worse off then us,
I have friends that remind me off this. Something my doctor told me and this I held on too "One day you could go into remission" It happened for me it took years but it did happen. I now suffer a lot less pain and take very few medications. Remeber God loves you, I held onto that when ever it got too much. For me going to church was wonderful I meet people who understood what is happening to me I have several friends with FMS. Helping them and their family members understand what is happening with them helps me.

Kathy
Fibromyalgia. chronic fatigue, migraine, meopause

Endep, Temazepam,Baclofen

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 6/17/2010 9:06 AM (GMT -7)   
Shann, welcome to the land of friendly fibromites. You will find caring and understanding
people here. Know that we are all pulling for you and hoping things will get better.

Take one day at a time, and find time during the day just for you .Sending gentle hugs.

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 

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